Fistula matters

[Bajanne]

I had my fistula operation two days ago.  The doctor told me as I was leaving not to get it wet and to 'bathe' at the sink. But he didn't say how long I should do that.  Can I go under the shower or in the bath now?  I will call him later today, but I would like to know what you guys did. 
Next, I am living on a tropical island - that means year round and island round beaches.  Do you guys on dialysis go to the beach still?
I am not due for dialysis until this heals (they said about 3 months) During this time, can I go to the beach?
thirdly, I read in a post about exercising to make the fistula bigger.  Someone tell me about that, please.
Aurora

[Epoman]

I had my fistula operation two days ago.  The doctor told me as I was leaving not to get it wet and to 'bathe' at the sink. But he didn't say how long I should do that.  Can I go under the shower or in the bath now?  I will call him later today, but I would like to know what you guys did. 
Next, I am living on a tropical island - that means year round and island round beaches.  Do you guys on dialysis go to the beach still?
I am not due for dialysis until this heals (they said about 3 months) During this time, can I go to the beach?
thirdly, I read in a post about exercising to make the fistula bigger.  Someone tell me about that, please.
Aurora

I would stay out of the ocean until the stitches are out at least and if you take a shower try to keep it dry and covered. About exercising your fistula, YES the more you do it the better and bigger it will get and the techs will have a easier time sticking you. Get a soft rubber ball and squeeze it 24/7 seriously, do it while you watch TV, eat, relax, DO NOT stop exercising, squeeze hard and a lot. It will only make your entry into dialysis easier. If you do not get that fistula big the techs may/WILL infiltrate your fistula and cause problems and it will be painful. Trust me I've been there and back.

By the way welcome to the website. Please goto the "Introduce Yourself" section and tell us your story. Please make a new post/topic.

I hope I didn't scare you with my post BUT that is what this site is all about THE TRUTH! 

[Bajanne]

Thank you so much.  I was in Office Max the other day and saw one of those goofy squeeze balls.  My frined Nick bought it for me, so it is now my Nickey Nick, and I will do as you said.  Should be exercising it so much even before the stitches heal?
I am only now responding because the friend's computer I am using (the operation was done in a USVI island and I live in the BVI) that I was using went on the blink after a power surge.
This site is already helping me tremendously and I thank you for it.
Aurora

[Epoman]

Thank you so much.  I was in Office Max the other day and saw one of those goofy squeeze balls.  My frined Nick bought it for me, so it is now my Nickey Nick, and I will do as you said.  Should be exercising it so much even before the stitches heal?
I am only now responding because the friend's computer I am using (the operation was done in a USVI island and I live in the BVI) that I was using went on the blink after a power surge.
This site is already helping me tremendously and I thank you for it.
Aurora

Thank you! it makes me happy that this site is helping you. I wish I had a site like this when I was new to dialysis. And yes you should be exercising now just don't over do it until you feel comfortable. If you start feeling pain at the incision site then take a break. But once the incision heals then you need to squeeze that ball 24/7.

[Rerun]

In my opinion if your fistula is in your lower arm, use the ball.  If it is in the upper arm, do either wall push-ups (where you put your hands on the wall and put your feet back a ways and do slow push-ups) or after a month or so do regular push-ups.  That will strengthen your upper arm.

My AV fistula is just now 3 months old.  I have had the Hickman for a month.  I am scared to DEATH of using the fistula.  I had them show me the needles.  They showed me 17 gauge needles about 1 inch long.  GOD!  There is no way that I can see me using those 2 needles 3 fricking times a week.  I'm going to eat valium prior to going.  I don't care if it dialyzes out, I just need to get through the needle stick.  I have the Hickman.... I think I will get my money's worth out of it.  Isn't it good for a year?  I know about the infection risk, but I don't care.  When it gets infected, I'll go to the fistula.

Can you EVER shower with the Hickman?  I'm sick of baths!

[O in]

In my opinion if your fistula is in your lower arm, use the ball. If it is in the upper arm, do either wall push-ups (where you put your hands on the wall and put your feet back a ways and do slow push-ups) or after a month or so do regular push-ups. That will strengthen your upper arm.

My AV fistula is just now 3 months old. I have had the Hickman for a month. I am scared to DEATH of using the fistula. I had them show me the needles. They showed me 17 gauge needles about 1 inch long. GOD! There is no way that I can see me using those 2 needles 3 fricking times a week. I'm going to eat valium prior to going. I don't care if it dialyzes out, I just need to get through the needle stick. I have the Hickman.... I think I will get my money's worth out of it. Isn't it good for a year? I know about the infection risk, but I don't care. When it gets infected, I'll go to the fistula.

Can you EVER shower with the Hickman? I'm sick of baths!

wats a hickman?

only 17g needles? i use 14g and with a developed fistular there is no feeling in insertion whatsoever 
so get into that fistular s.a.p. the sooner u do the sooner it will develop and u2 wont feel a thing.

oin

[Epoman]

In my opinion if your fistula is in your lower arm, use the ball.  If it is in the upper arm, do either wall push-ups (where you put your hands on the wall and put your feet back a ways and do slow push-ups) or after a month or so do regular push-ups.  That will strengthen your upper arm.

My AV fistula is just now 3 months old.  I have had the Hickman for a month.  I am scared to DEATH of using the fistula.  I had them show me the needles.  They showed me 17 gauge needles about 1 inch long.  GOD!  There is no way that I can see me using those 2 needles 3 fricking times a week.  I'm going to eat valium prior to going.  I don't care if it dialyzes out, I just need to get through the needle stick.  I have the Hickman.... I think I will get my money's worth out of it.  Isn't it good for a year?  I know about the infection risk, but I don't care.  When it gets infected, I'll go to the fistula.

Can you EVER shower with the Hickman?  I'm sick of baths!

Great advice about the upper arm fistula, all I know about is "lower" arm fistulas because when I started dialysis back in the day they ONLY did lower arm fistulas.

As for how long the Hickman can last? It is all up to you and how well you keep it clean. But I have seen people have one for a year or more. I had showered with mine but I used water-proof bandages. It was like a huge patch 6" X 6". The Hickman WILL eventually get infected but of course you want it to last as long as possible to allow your fistula to mature. The bigger the fistula, the easier it will be to stick you.

About the needles, they showed you 17 gauge needles, eventually they will move you to 14 gauge which are even bigger. Not longer but the needle diameter is bigger to allow better blood flow.

I wish I COULD take a bath all I can take is showers. I have not enjoyed or soaked in a bath for 5 years. oh well at least I can get in the shower and use a shower bench.

[Epoman]

In my opinion if your fistula is in your lower arm, use the ball. If it is in the upper arm, do either wall push-ups (where you put your hands on the wall and put your feet back a ways and do slow push-ups) or after a month or so do regular push-ups. That will strengthen your upper arm.

My AV fistula is just now 3 months old. I have had the Hickman for a month. I am scared to DEATH of using the fistula. I had them show me the needles. They showed me 17 gauge needles about 1 inch long. GOD! There is no way that I can see me using those 2 needles 3 fricking times a week. I'm going to eat valium prior to going. I don't care if it dialyzes out, I just need to get through the needle stick. I have the Hickman.... I think I will get my money's worth out of it. Isn't it good for a year? I know about the infection risk, but I don't care. When it gets infected, I'll go to the fistula.

Can you EVER shower with the Hickman? I'm sick of baths!

wats a hickman?

only 17g needles? i use 14g and with a developed fistular there is no feeling in insertion whatsoever 
so get into that fistular s.a.p. the sooner u do the sooner it will develop and u2 wont feel a thing.

oin

If you use the same spot for insertion every time then yes the pain is almost non-existent but if you rotate your insertion sites then it will take longer to deaden the top layer skin. And even then once in a while you will hit a nerve ending, that is not fun. Again I will reiterate if you use the same spot for needle insertions sometimes called a "Buttonhole" technique then the pain is almost non-existent.

A "Hickman" is a temporary chest or neck access.

[Rerun]

Does the hole heal in 48 hours (dialysis to dialysis) or does it matter if it heals? 

I get quezy just reading your responses.  I'm sure I'll pass out!  After 20 years of kidney problems I still hate blood draws.  I'm not a good candidate for Kidney Failure.  God doesn't make mistakes, but maybe he meant for my sister to get this and not me! 

Thanks for your encouragement.

[Epoman]

Does the hole heal in 48 hours (dialysis to dialysis) or does it matter if it heals? 

I get quezy just reading your responses.  I'm sure I'll pass out!  After 20 years of kidney problems I still hate blood draws.  I'm not a good candidate for Kidney Failure.  God doesn't make mistakes, but maybe he meant for my sister to get this and not me! 

Thanks for your encouragement.

The hole should heal in that time however it won't matter if it's not totally healed if you rotate the insertion sites the previous site will have plenty of time to heal. If you use the "Buttonhole" technique:

http://www.esrdnetwork.org/docs/Buttonhole%20Brochure.pdf

Then it really won't matter because you will take off the scab and use the same spot as last dialysis session.

Sorry about making you "quezy" I just tell it like it is so you are prepared.

I'm not being I just don't want you to be  or  when you find something out.

 

[Bajanne]

Well I was back on the ferry to St.Thomas, US Virgin Islands.  I went back to the surgeon about my non-functioning fistula.  He said he will now have to do it in my upper arm.  So next Tuesday, I will be in the operating room again. More money!!

[Epoman]

Well I was back on the ferry to St.Thomas, US Virgin Islands.  I went back to the surgeon about my non-functioning fistula.  He said he will now have to do it in my upper arm.  So next Tuesday, I will be in the operating room again. More money!!

Damn sorry to hear that, I wish you luck in getting the upper arm working.

[Rerun]

That really sucks.  Read that article I sent you about the difference between an AV fistula and a graft.  I know fistulas are preferred, but if it doesn't work and you have crappie veins then you may want to explore the graft.  Don't let them have the final say.  It is your arm and your money. 

[Bajanne]

Well, I found out that what I have is a graft, not a fistula.  It is now in my upper arm.  But they didn't take out the first one, so I still have those tubes on the inside in my lower arm.  My nephrologist, when I told him about that, said that it isn't a problem.  I really hope so.
This one seems to be working - I even heard the noise in a stethoscope.
One problem I am having though, apart from the pain, is the my hand on that side gets cold and numb.  It goes and comes.  Today at dialysis, a nurse wrapped it with a hot wet towel and it felt better.
Has anyone ever had a problem like this.  It depends on how I rest my arm, it seems.

[Epoman]

Well, I found out that what I have is a graft, not a fistula.  It is now in my upper arm.  But they didn't take out the first one, so I still have those tubes on the inside in my lower arm.  My nephrologist, when I told him about that, said that it isn't a problem.  I really hope so.
This one seems to be working - I even heard the noise in a stethoscope.
One problem I am having though, apart from the pain, is the my hand on that side gets cold and numb.  It goes and comes.  Today at dialysis, a nurse wrapped it with a hot wet towel and it felt better.
Has anyone ever had a problem like this.  It depends on how I rest my arm, it seems.

Yeah my hand gets numb too, It's from leaving your arm in one position for too long OR it could be a thing called "Steel Syndrome" but we won't even talk about that yet, because it may not even be that. Hopefully once your arm gets used to dialysis the numbness will go away, hopefully.
I had the same problem when I first started. And even to this day my hand will get numb sometimes.

As for the non-working graft in your lower arm. Hopefully it will be OK and not have to be removed. I have seen the surgery scars and they are not pretty. They don't just "SLIDE" the graft out they need to cut/dig it out. The graft becomes "one" with your skin. But don't worry I have had mine in for 11 years (it clotted 6 or 7 years ago and has never caused me any problems) It becomes a problem when the graft gets infected and if it does they may need to remove it, to prevent further problems.

I hope this post does not scare you but that's what this site is all about getting the truth.

[Bajanne]

I appreciate the truth.  I can deal with that.  The doctor says that my graft will be ready for use in 2 weeks time, but since I am travelling next weekend - going to a conference in the islands of Antigua - I will not see him until the next week.  He didn't want them to use it until my follow-up visit.  That works for me.  I really want to put off using this means of dialysis for a long time.  I am so scared of the thought of being stuck twice every session.  And this having to hold the spot afterward until they tape it!   Not looking forward to it at all.  I so prefer the catheter route.  But I am aware it is not the optimum, because of the infection risk.
Tell me about Lidocaine again, please.
By the way, I was allergic to that transparent adhesive that they used as my bandages and got some skin problems.  They had to change to the stretchy kind.  It never ends, does it!

[BlackJack]

I've never been stuck with those harpoons and have the utmost respect for those of you that do get it 6 times a week.  Lidocaine injection would require at least 2 or more additional punctures per treatment and there is some debate as to whether it toughens the skin over time.  I've also seen lidocaine injected into one place and then an entirely different place is used for cannulation.   Lidocaine injection affects only the spot where it was injected so even 1/4 or 1/2" difference is the difference between relief and no-effect.  Inquire about EMLA cream.  It's a lidocaine cream which is applied to a wide area about 1 hour before cannulation.  I think it's covered by insurance.  I'm not sure if it works or not, but whether the relief is physical or psychological really doesn't matter, as long as there is relief.  Some veteran techs and nurses will scoff over the need for any anesthetic relief and say that by the time they get that stuff applied, you can be on the machine.  Screw that, they're not getting stuck.  Demand it from your doctor if you want it.  However, try to get the first few cannulations out of the way without any pain relief so that you have a baseline.  I'm hoping it won't be as bad as you think it will.  Do you have a lot of fat tissue over the graft or are your arms lean?  There are a lot of variables.  14g needles are unnecessary as well.  You can get good flows with 15 and 16.  Good luck to you.

[Rerun]

Bajanne2000 - I'm with you.  I am still on the Hickman and am dreading the fistula.  I am going to use the Hickman until it does get infected.  It cost $13,000 and I'm going to get every penny out of it.  I just cannot imagine getting stabbed twice three times a week.  I hate blood draws once every 6 months!  Can't they come up with something better? 

[Bajanne]

I can't even use your argument - my Hickman was free!  None of the other patients complain about the sticking.  I am hoping that it is something you get accustomed to. I am not at all looking forward to November 7.  I think you guys will hear my scream!

[Epoman]

I appreciate the truth.  I can deal with that.  The doctor says that my graft will be ready for use in 2 weeks time, but since I am travelling next weekend - going to a conference in the islands of Antigua - I will not see him until the next week.  He didn't want them to use it until my follow-up visit.  That works for me.  I really want to put off using this means of dialysis for a long time.  I am so scared of the thought of being stuck twice every session.  And this having to hold the spot afterward until they tape it!   Not looking forward to it at all.  I so prefer the catheter route.  But I am aware it is not the optimum, because of the infection risk.
Tell me about Lidocaine again, please.
By the way, I was allergic to that transparent adhesive that they used as my bandages and got some skin problems.  They had to change to the stretchy kind.  It never ends, does it!

Ask them to use "Paper tape" to hold your gauge. I can't stand that transparent tape, it rips my hairs out. It actually hurts when it's pulled off. It's a good tape if your hairless and have leather for skin, plus it tears into pieces really well. I only let them us "Paper Tape" it's not as sticky so it comes off easily and causes no irritation to my skin.

[Bajanne]

You are so right!  They can't use the transparent tape with me.  I got some bad skin problems with it.  They were using it with my catheter as well as the graft.  It itched me badly and when they took it off, in some places my skin came off (little spots).  They said I was allergic to it, so they use a stretchy white bandage with tiny holes now and that is better.  I will insist on the paper tape.

[Rerun]

I'm using my arm for one needle and the line in my chest for the other access.

I'm scared to move my arm!  By the end of 3 hours my fingers are cold and stiff!     They told me NOT to move my arm!  I think LifeOnHold said she use to knit!  One of our posts said the needle fell out and blood squirted everywhere. 

How much can I move my arm??   

[kevno]

I have two lines in my neck, last Thursday one of them clotted off.   So now I have no choice but to use one needle and one line.  I lost the bottom 6+inches of the fistula when I got too dry. the nurses can only get one needle in now. One nurse does try to get two in( Rachel ). But up to now she as not got the second needle in.

Kevno

[Bear]

It was interesting, spotting this topic, seeing how far back it started & how recent the
obtaining of a fistual is/was for some of you, who I assumed were "old hands" 

Living somewhere as warm & beachie as you do Baj' I can tell you I am in my pool all the
time & fully intend to hit the surf soon....but like everyone I had to wait thru the healing
process. I will probably wear a neoprene sleeve to protect it in the sea (& from knocks on the
surfboard)

The thought of sticking myself on a regular basis was...well not appealing. But after a year on
a non-working P.D. - my creatinin was always sky-high, along with everything else & I had about
enough energy to crush a grape! - I thought O.K.I guess we have to this route 
But since I went to Home Haemo, they were keen to get  you doing it a.s.a.p. Actually I found
this was a good thing - you get a better feel for your fistula then nurses who are stabbing a dozen
patients a day, all with varying access....I had several 'blows' when the nurses did it, a couple times
ending up in a non-dialysis session/come back tomorrow scenario
Since doing it myself I have only had one 'blow'. Unfortunately, my fistula (upperarm btw, as a sonar
 scan of my arms revealed most of my veins were pretty useless  ) has moved & I've had to go back
 to using sharps about 2/3 of the time, so the chances are higher of getting a blow. I use 14g btw.
Yes it does stress me out a bit when I am setting up, wondering if I'm gonna get blunts in the
buttonhole sites, or whether the sharps will puncture the side if I have to use them.
BUt overall things are improving, he says optimistically 
I know a lot of patients on in-unit dialysis are encouraged to self-stick. I think if you do, you'll feel
a lot more confident if you travel & have to go to another center for dx.

[Bear]

...Oh! and now I know where the expression "Hickey" comes from