I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: boxman55 on January 25, 2007, 06:43:31 PM

Title: Bad Fistula what next?
Post by: boxman55 on January 25, 2007, 06:43:31 PM
My fistula operation did not work I had it done on my left wrist. I am using a chest cath but I've read you don't get the best dialysis through that. I have an appt. with the surgeon on the 13th of Feb. trying to guess what he is going to tell me will be next, any ideas?
Boxman55
Title: Re: Bad Fistula what next?
Post by: Rerun on January 25, 2007, 06:46:46 PM
Have you considered Peritoneal Dialysis?  He may suggest that.  They can put fistulas in you leg.  There was a guy at my other center that had one.  He did fine. 

Dialysis is only as good as the access.  So, you do the math.   :popcorn;
Title: Re: Bad Fistula what next?
Post by: jbeany on January 25, 2007, 07:32:34 PM
My left wrist fistula didn't work.  My left lower arm graft didn't work.  My upper left arm graft works, for now.  The next one is my choice - right arm or left leg.  I'm thinking leg, because I sleep on my side, and if I use my arm, I'll never get comfortable - I already can't sleep on the left side.
Title: Re: Bad Fistula what next?
Post by: Zach on January 25, 2007, 09:19:00 PM
Try exercising the arm before the next surgery.  Start doing curls as far in advance of the next fistula surgery as you can.  It may help.
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 26, 2007, 02:04:07 AM
My first one failed because it was too small and clotted off. They dried me out at dialysis. Usually you want to make your target but for the 2nd fistula I left .5 on me so I wouldn't be too dry like last time and it has worked for 18 months now!  :thumbup;
Title: Re: Bad Fistula what next?
Post by: renal30yrs on January 26, 2007, 05:25:15 AM
I have been very fortunate so far regarding fistula.  I'm still using the same fistula created in April 80'.  I think the key to maintain your fistula is 1) never let them use tourniquet and 2) always insist on doing he needle removal on your own.
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 26, 2007, 12:39:35 PM
I have been very fortunate so far regarding fistula.  I'm still using the same fistula created in April 80'.  I think the key to maintain your fistula is 1) never let them use tourniquet and 2) always insist on doing the needle removal on your own.
Really? How come?

I know they ALWAYS use a tourniquet on me which I thought they had to (especially if someone has a deep fistula but mine is just so snakey they use it to not have to do any guessing because it is not that visable) but I don't feel comfortable when they flush the line with saline with the tourniquet still on my arm. As for the needle removal .. I don't get why. ???
Title: Re: Bad Fistula what next?
Post by: Epoman on January 26, 2007, 12:48:07 PM
I have been very fortunate so far regarding fistula.  I'm still using the same fistula created in April 80'.  I think the key to maintain your fistula is 1) never let them use tourniquet and 2) always insist on doing the needle removal on your own.
Really? How come?

I know they ALWAYS use a tourniquet on me which I thought they had to (especially if someone has a deep fistula but mine is just so snakey they use it to not have to do any guessing because it is not that visable) but I don't feel comfortable when they flush the line with saline with the tourniquet still on my arm. As for the needle removal .. I don't get why. ???

Removing your own needles is a VERY good thing to do. Either that or make sure the Tech does NOT apply pressure until the needle is TOTALLY out. Let me repeat TOTALLY out, it takes timing but it is ideal. Simple place the gauze over the site and do not apply pressure until the needle is OUT. Some techs will apply pressure and pull the needle, doing so is not only painful but can cause scar tissue and that is bad for the fistula. As for the tourniquet is should ONLY be used when the fistula is first being developed and removed as soon as the needles are in place.

- Epoman
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 26, 2007, 12:53:43 PM
I have been very fortunate so far regarding fistula.  I'm still using the same fistula created in April 80'.  I think the key to maintain your fistula is 1) never let them use tourniquet and 2) always insist on doing the needle removal on your own.
Really? How come?

I know they ALWAYS use a tourniquet on me which I thought they had to (especially if someone has a deep fistula but mine is just so snakey they use it to not have to do any guessing because it is not that visable) but I don't feel comfortable when they flush the line with saline with the tourniquet still on my arm. As for the needle removal .. I don't get why. ???

Removing your own needles is a VERY good thing to do. Either that or make sure the Tech does NOT apply pressure until the needle is TOTALLY out. Let me repeat TOTALLY out, it takes timing but it is ideal. Simple place the gauze over the site and do not apply pressure until the needle is OUT. Some techs will apply pressure and pull the needle, doing so is not only painful but can cause scar tissue and that is bad for the fistula. As for the tourniquet is should ONLY be used when the fistula is first being developed and removed as soon as the needles are in place.

- Epoman
Ah okay! Yeah that much I know and they do it correct. I am always like a hawk with them but I am still learning! Thanks for teaching me Epoman!  :2thumbsup;

As for the tourniquet, thanks to your teaching, I will be telling them I want it off when they flush my line when the needle is in. I think they are just lazy and don't want to put it on again for the 2nd line.
Title: Re: Bad Fistula what next?
Post by: Epoman on January 26, 2007, 01:01:01 PM
I have been very fortunate so far regarding fistula.  I'm still using the same fistula created in April 80'.  I think the key to maintain your fistula is 1) never let them use tourniquet and 2) always insist on doing the needle removal on your own.
Really? How come?

I know they ALWAYS use a tourniquet on me which I thought they had to (especially if someone has a deep fistula but mine is just so snakey they use it to not have to do any guessing because it is not that visable) but I don't feel comfortable when they flush the line with saline with the tourniquet still on my arm. As for the needle removal .. I don't get why. ???

Removing your own needles is a VERY good thing to do. Either that or make sure the Tech does NOT apply pressure until the needle is TOTALLY out. Let me repeat TOTALLY out, it takes timing but it is ideal. Simple place the gauze over the site and do not apply pressure until the needle is OUT. Some techs will apply pressure and pull the needle, doing so is not only painful but can cause scar tissue and that is bad for the fistula. As for the tourniquet is should ONLY be used when the fistula is first being developed and removed as soon as the needles are in place.

- Epoman
Ah okay! Yeah that much I know and they do it correct. I am always like a hawk with them but I am still learning! Thanks for teaching me Epoman!  :2thumbsup;

As for the tourniquet, thanks to your teaching, I will be telling them I want it off when they flush my line when the needle is in. I think they are just lazy and don't want to put it on again for the 2nd line.

It's ok to leave it on while they are placing both needles as long as they are quick about it and not leave it on for more that a minute or two. What about having them flush the lines with saline after BOTH lines are in? If they are flushing the lines I assume they are doing a "wet" stick?

- Epoman
Title: Re: Bad Fistula what next?
Post by: BigSky on January 26, 2007, 03:13:24 PM
My fistula operation did not work I had it done on my left wrist. I am using a chest cath but I've read you don't get the best dialysis through that. I have an appt. with the surgeon on the 13th of Feb. trying to guess what he is going to tell me will be next, any ideas?
Boxman55

Did they do a study of the veins in the area they wanted to put the fistula in?  Here before they put fistulas in now they do a study to make sure its the best area for a fistula to try and avoid them not working after being put in.
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 26, 2007, 06:40:52 PM
It's ok to leave it on while they are placing both needles as long as they are quick about it and not leave it on for more that a minute or two. What about having them flush the lines with saline after BOTH lines are in? If they are flushing the lines I assume they are doing a "wet" stick?

- Epoman

I wanted to thank you Epoman. I just got back from dialysis just now. When I last posted in this thread it was right before my cab got here. So I went to dialysis. I told my nurse how I wanted the tourniquet, and she agreed with me and said she sticks both in and then takes the tourniquet off and then puts in the saline. I asked her why the other nurses usually put the saline in for each one as soon as they cannulate me? Why don't they do it like she does (the way you posted to do Epoman). She doesn't know but agreed that the way to do it is the way I was telling her to do it today.

So thank you Epoman for guiding me. I take your 13 years experience very seriously and am learning that I have the right to demand my care be a certain way.  I also told the nurse who cannulated me today exactly the angle and how I want it because since I have a different nurse all the time I realize I have to be on top of things! I can't wait til my buttonholes are finally ready for blunts so I can just cannulate myself.

Um... Actually I am going to make a new thread and add the link to this post because I have more questions. Thanks.

Sorry for taking this off topic (even though it isn't I have made this about my fistula), I just wanted to thank Epoman in the thread where advice was given.
Anyone going to reply to me wait for the new link ;)  :thx;

*edit: Link = http://ihatedialysis.com/forum/index.php?topic=2499.msg34943#msg34943


My fistula operation did not work I had it done on my left wrist. I am using a chest cath but I've read you don't get the best dialysis through that. I have an appt. with the surgeon on the 13th of Feb. trying to guess what he is going to tell me will be next, any ideas?
Boxman55

Did they do a study of the veins in the area they wanted to put the fistula in? Here before they put fistulas in now they do a study to make sure its the best area for a fistula to try and avoid them not working after being put in.
I remember when I got my first one they didn't run any tests. Why? Oh because I am young so I *must* have good viens  ::)
Title: Re: Bad Fistula what next?
Post by: boxman55 on January 26, 2007, 08:01:41 PM
No there was no study. All I got was some touchy feely by both the Nepth and the surgeon then off to have it done. at first you could really hear it then it died out. It was never used. What worries me is, does this guy know what he is doing and the other is once I do get one that works I am not thrilled about the needles. Hooking up to the cath is easy.  Boxman55
Title: Re: Bad Fistula what next?
Post by: jbeany on January 26, 2007, 08:05:41 PM
I had studies done on mine, and they still failed - it's no guarantee.
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 26, 2007, 08:26:21 PM
No there was no study. All I got was some touchy feely by both the Nepth and the surgeon then off to have it done. at first you could really hear it then it died out. It was never used. What worries me is, does this guy know what he is doing and the other is once I do get one that works I am not thrilled about the needles. Hooking up to the cath is easy.  Boxman55
Oh I know what you mean! That is the same thing I thought but I guess he just underestimates some of us ...  ::)

As for the needles oh I can relate to how you definately feel!! But really ... it comes down to this: The needles are the better of two evils. You can get an infection a lot easier through the chest perm cath and it goes directly to the heart (I know what you are probably thinking .. same thing I did which was, "Oh come on! I have had this in for over a year! I haven't got an infection YET!" but with the fistula you also get better kt/V and flow rates. I am sure there are a lot more people like Zach and Bigsky and BillP and Epoman!

I have been having the needles in my arm now for months (yes just months) and let me tell you I am the biggest chicken (I couldn't even stab myself with the subcutanious needles for Eprex (Canadian version of Epogen) when I was on PD!!!). But after time your arm gets used to it and it doesn't seem to be as bad. Plus you know you have to have it. But there is a great thing that helped me. Does your local drug store sell Emla cream? It is a combination of lidocaine and prilocaime in a tube of cream that numbs your arm where they stick you! It evaporates so I use it with cling wrap and it works for me!  :thumbup;
Title: Re: Bad Fistula what next?
Post by: boxman55 on January 27, 2007, 08:06:47 AM
But there is a great thing that helped me. Does your local drug store sell Emla cream?

There is also vicodin. Just kidding ::) Thank you for your advice seeing how lately I have been living at the drug store I will look for it. As far as the needles I will just have to suck it up like we all have. Thanks again--Boxman55
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 27, 2007, 01:44:11 PM
But there is a great thing that helped me. Does your local drug store sell Emla cream?

There is also vicodin. Just kidding ::) Thank you for your advice seeing how lately I have been living at the drug store I will look for it. As far as the needles I will just have to suck it up like we all have. Thanks again--Boxman55
The Emla cream wasn't covered where I live (Ya, I know .. isn't everything covered in Canada? Things they don't see as neccessary aren't ::) ..) so I don't know if you can get it covered. It is usually expensive so use sparingly ;)  That is another reason I use the wrap! So I can use very little without losing any ;)
Title: Re: Bad Fistula what next?
Post by: del on January 27, 2007, 01:53:16 PM
Hubby does not use tourniquet anymore he just holds his arm when I put the needle it.  But then again he has a fistula that looks like a gardenhose.  Has been working fine for almost 7 years now. :clap;
Title: Re: Bad Fistula what next?
Post by: livecam on January 27, 2007, 05:34:22 PM
My original fistula was placed right at the boundary between the wrist and hand.  The area of the fistula and surgery was very small, about 3/4 of an inch.  That fistula failed on the first use, the vein blew with the entire arm swollen for 10-14 days.  After that a fistulagram (similiar to angioplasty) was done where it was found that it would not be usable.  The original surgeon went back in and created a new fistula about 6 inches further up the arm.  He extended the original incisiion so it looks like a single continuous one. This time I went through the ball and tourniquet excersizes for many months until it was ready.  That fistula worked perfectly from first use and never caused any problems.  If you are asking what he might do it might be to just go further up your arm.
Title: Re: Bad Fistula what next?
Post by: boxman55 on January 27, 2007, 06:43:09 PM
my initial incision was right above the hand also about an inch long. So you are probably right about just moving up the arm a little. It just pisses me off that I have to go through  it again

Boxman55
Title: Re: Bad Fistula what next?
Post by: charee on January 27, 2007, 07:26:52 PM
I had mapping of my arm before they operated I was told i could only have a upper arm fistula as the veins in my lower are were to narrow. The day of the op i signed for a upper arm fistula I woke up in recovery with a bandage on my lower arm near my wrist asked why no one could tell me when the Dr came he said i thought I'd  try your lower arm first as its a better position than upper, but lt looks like is not working WTF you already told me that it wouldn't work so why do it? So long story ended back in hospital the next week and now have a working upper arm fistula still not real sure why they did it when i woke up from the first op i had a black drawing on my upper arm were they should have put .... maybe they were having a bad day at my expense  ???
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 27, 2007, 08:26:03 PM
I had mapping of my arm before they operated I was told i could only have a upper arm fistula as the veins in my lower are were to narrow. The day of the op i signed for a upper arm fistula I woke up in recovery with a bandage on my lower arm near my wrist asked why no one could tell me when the Dr came he said i thought I'd  try your lower arm first as its a better position than upper, but lt looks like is not working WTF you already told me that it wouldn't work so why do it? So long story ended back in hospital the next week and now have a working upper arm fistula still not real sure why they did it when i woke up from the first op i had a black drawing on my upper arm were they should have put .... maybe they were having a bad day at my expense  ???
For me they didn't even do the mapping as the surgeon looked at me as a kid figuring my arms would be perfect for anything. Needless to say my first one failed, but just like boxman said,
my initial incision was right above the hand also about an inch long. So you are probably right about just moving up the arm a little. It just pisses me off that I have to go through it again

Boxman55
mine was right at the wrist and then when it failed only days later they did the new one just a little further up the arm.

Title: Re: Bad Fistula what next?
Post by: Zach on January 28, 2007, 05:03:36 AM
This small research project studied exercising the arm before the fistula surgery is performed:


http://journals.elsevierhealth.com/periodicals/yajkd/medline/record/MDLN.12640286

Just thought we need to read this.
Title: Re: Bad Fistula what next?
Post by: boxman55 on January 28, 2007, 07:54:13 AM
Angieskidney, my goodness my incision on the wrist is barely noticable they went to town on you. Zach, I will take your advice and start curling both arms. Thanks--Boxm55
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 28, 2007, 01:31:19 PM
Angieskidney, my goodness my incision on the wrist is barely noticable they went to town on you. Zach, I will take your advice and start curling both arms. Thanks--Boxm55
That is a picture taken in direct sunlight right after the stitches were taken out of the 2nd incision. Here is a pic of how it looks right now:

Title: Re: Bad Fistula what next?
Post by: kitkatz on January 28, 2007, 06:10:58 PM
It looks a lot better than it did in the last pics you had posted of your arm..  I am afraid to post pics of my arm. Might scare some people with grafts right now.
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 28, 2007, 08:28:23 PM
It looks a lot better than it did in the last pics you had posted of your arm..  I am afraid to post pics of my arm. Might scare some people with grafts right now.
Well that first pic I wasn't even allowed to have the bandage OFF yet but it got wet and I was in the middle or changing it when I got the bright idea to take a quick pic of it ;)

So of course it looked bad. It was still really fresh. They had JUST removed the stitches. That is also why it was so very red.  :-[
Title: Re: Bad Fistula what next?
Post by: boxman55 on January 30, 2007, 05:15:29 PM
Angie,  it looks soo much better. once it healed up Boxman55
Title: Re: Bad Fistula what next?
Post by: angieskidney on January 30, 2007, 05:24:25 PM
Angie,  it looks soo much better. once it healed up Boxman55
Yes, exactly! lol that is why I thought it best for me to take a new pic to show you. ;) That way people know it does heal up and when their's is new not to freak out because it does get lighter and less noticable ;)
Title: Re: Bad Fistula what next?
Post by: nextnoel on February 02, 2007, 09:16:48 AM
Angie, thanks for both pictures - I don't know yet what type dialysis I will have when the time comes, and I feel much better having an idea of what to expect if I have fistula surgery!
Title: Re: Bad Fistula what next?
Post by: livecam on February 02, 2007, 06:52:22 PM
Angie..I gotta tell you..those Canadian vascular guys are hacks!  What in god's name were they doing with those curving incisions?  They sort of look like transplant scars.  One of these days I'll shoot a pic of mine and post.  The scar isn't too gross but the vein bulges are.  :-\
Title: Re: Bad Fistula what next?
Post by: angieskidney on February 02, 2007, 08:45:19 PM
Angie..I gotta tell you..those Canadian vascular guys are hacks!  What in god's name were they doing with those curving incisions?  They sort of look like transplant scars.  One of these days I'll shoot a pic of mine and post.  The scar isn't too gross but the vein bulges are.  :-\
wtf? Transplant scars? LoL Maybe I will post mine cuz my transplant scar is completely straight except for the very bottom which is curved (but that would not be in the photo because frankly that is a little too low for me to show :P  :-[

Anyway, when it comes to the fistula scars, it depends on the surgeon. The surgeon I had did it that way while the other one I never got did it the straight way.
Title: Re: Bad Fistula what next?
Post by: boxman55 on February 03, 2007, 03:03:36 PM
Wow guys, we need to start a whole new thread entitled "show us your scars" It's sad that we have to go through this sh** and the last thing we need to have happen is to be critisized about are scars. no matter what they look like they are nessasary evils.
Title: Re: Bad Fistula what next?
Post by: boxman55 on February 06, 2007, 04:15:24 PM
well I met with the vascular surgeon  today. the plan is to do the vein mapping in the morning then do the surgery in the afternoon either on the left arm above the old one or depending on the mapping on my right arm this all takes place on the 22nd of this month  Boxman55
Title: Re: Bad Fistula what next?
Post by: Sluff on February 06, 2007, 05:10:18 PM
well I met with the vascular surgeon  today. the plan is to do the vein mapping in the morning then do the surgery in the afternoon either on the left arm above the old one or depending on the mapping on my right arm this all takes place on the 22nd of this month  Boxman55


Well I hope everything goes well for you Boxman.
Title: Re: Bad Fistula what next?
Post by: boxman55 on February 08, 2007, 04:59:39 PM
Quote
Well I hope everything goes well for you Boxman.

Hey thanks Sluff ! sooner or later I will have to suck it up and get use to the needles. Hooking up to the cath is painless but it is a pain in its own right. once the fistula is working I will have to get use to the needles. yeeks!!   Boxman55





EDITED: Fixed Quote Tag Error - Sluff, Moderator




Title: Re: Bad Fistula what next?
Post by: shay_pcb on February 08, 2007, 06:00:57 PM
Just read this thread for the first time today, and thought I'd put my  :twocents; in. I had an upper arm fistula done, and it clotted a month later. I had a lower arm fistula put in and the upper unclotted, and it clotted a week later. They unclotted both, and it only lasted a few days. None had ever been used. I ended up getting a cath placed and going on PD.

And since there are pics up, I figured I'd put one of my arm up. I had stitches the first 2 times and 29 staples the last time. Here's the scars. The surgeries were from Aug-Dec of 2005.
Title: Re: Bad Fistula what next?
Post by: angieskidney on February 22, 2007, 10:35:33 AM
Good pics! Anyone else getting any up??  :clap; :2thumbsup;
Title: Re: Bad Fistula what next?
Post by: Wattle on February 22, 2007, 01:46:23 PM
Angie, thanks for both pictures - I don't know yet what type dialysis I will have when the time comes, and I feel much better having an idea of what to expect if I have fistula surgery!

 :2thumbsup;  Thank you all for posting your fistula pics.

I am on PD and have not had fistula surgery. If and when I need to, I will have a greater understanding of what to expect.     :)
Title: Re: Bad Fistula what next?
Post by: angieskidney on February 22, 2007, 02:55:55 PM
Oh I just wanted to add, if your fistula pics are not like these but might in any way scare off new patients who've never had a fistula, please show the pic to Epoman or a mod first and ask before posting. Thanks.

I just thought I should say this because of one I posted before of a guy in my unit that Epoman said was not one I could post. It was a rarity anyway and not something anyone should worry about. Other than that, this is a great thread for tips on making sure your fistula works and how to take care of it and strenthen it!  :thumbup; and options to go to if it stops working.

Always make sure you have that bruit and thrill! :thumbup;
Title: Re: Bad Fistula what next?
Post by: kimcanada on February 23, 2007, 07:34:56 PM
WOW I never knew what a fistula looks like, I have mine put in on Wednesday so mine looks like a big bandage.  I try to peek at the other people in the unit, but don't like to look to hard.

Its a funny thing KD is I am right in the middle of it and still know so little.

IO was thinking of you Boxman55 when I got mine, I remembered you saying you were going again, best of luck to you

Kim
Title: Re: Bad Fistula what next?
Post by: Maz on February 23, 2007, 09:01:30 PM
I had a fistula made in my wrist on the 2/2 and by the 14/2 it had stopped working. I am now going to have another fistula made in the other arm near the elbow. I have very small viens apparently, they said at the time it was a little difficult but they got there in the end. I am not very happy as I was due to flyout for a friends wedding next week in NZ, I have to wait till Monday to see if I can still go or not.  I guess the reality of your freedom is just hitting home.  MY hand is still sore from the 1st fistula does this take a fair bit of  time to go away? Marion
Title: Re: Bad Fistula what next?
Post by: charee on February 23, 2007, 09:43:40 PM
Hi Marion They had 2 goes at putting in my fistula also the first one lower arm didn't work from the start had the upper arm done the next week that was back in October its going great . They both took 5 to 6 weeks to feel better , actually the one that doesn't work still aches some days , the difference i found was the upper arm one was bruised alot more than the  lower one had to rest it  on  a pillow for a couple of weeks even when i slept .It takes abit of getting used to sleeping  i was scared i would lie on it and bugger it, not so worried now that it has healed. Good luck with your next try..
Title: Re: Bad Fistula what next?
Post by: boxman55 on February 24, 2007, 01:22:54 PM
WOW I never knew what a fistula looks like, I have mine put in on Wednesday so mine looks like a big bandage. I try to peek at the other people in the unit, but don't like to look to hard.

Its a funny thing KD is I am right in the middle of it and still know so little.

IO was thinking of you Boxman55 when I got mine, I remembered you saying you were going again, best of luck to you

Kim
well I was talking with a nurse at my clinic who is an access specialist and she did not want me to go back with the same doc that did my first one. She hooked me up with another surgeon and I am seeing him on the 1st of March. We will keep you posted. hope yours is healing well.  Boxman55
Title: Re: Bad Fistula what next?
Post by: kitkatz on February 24, 2007, 04:45:34 PM
Yes, it takes awhile until the pan all goes away in the wrist area from the fistula surgery.   Mine took about a year to finally stop hurting.
Title: Re: Bad Fistula what next?
Post by: boxman55 on March 25, 2007, 04:38:38 PM
well I am scheduled to have my 2nd fistula on 4/19 after vein mapping they decided the right arm is it. I am not thrilled with that because I am right handed but they didn't like what they saw in the left arm so be it. stay tuned!  Boxman55
Title: Re: Bad Fistula what next?
Post by: kimcanada on March 25, 2007, 05:09:07 PM
boxman:

I know this one will be better, I have that vibe thingy going on :)

Please keep me posted, my fistula is doing good, it buzzing like crazy, I am about 3 weeks from the big pook  :-\

Kim
Title: Re: Bad Fistula what next?
Post by: Treasure on March 25, 2007, 10:34:16 PM
I was wondering if anyone has ever heard of this-- not that I can properly describe it:

I have a nice pulsating lump on top of my left  clavicle. Pulsing, like my fistula, pulsing. An ultrasound that puzzles my highly-skilled surgeon and the radiologist, seems to indicate that my fistula runs up my left arm, past my shoulder, and kinda empties into my jugular vein. And perhaps there's some blood flow even up from there...like to my head? 

I kinda know that fistulas can spontaneous happen in other parts of the body, but this seems to be an outgrowth from the one inside my elbow...

*shrug*

i can't figure out if i'm just highly evolved or from another planet.  or perhaps I'm some D+ cosmic science fair project. in any case, if it's some weird occurrence no one has ever seen before-- I have it! I've had a bleeding navel, no explanation. I've had polyhydraminios with two pregnancies, no explanation. A peritoneal cavity that's built like swiss cheese-- for no apparent reason. And the whole raging FSGS like no one has ever seen before...anyhoo...

so, if you've heard of a fistula that has a mind of it own and has set out on a journey to the northernlands, let me know. :banghead;

Title: Re: Bad Fistula what next?
Post by: AlasdairUK on March 26, 2007, 03:05:46 AM
I have my fistula on my right upper arm. The other day when I got out the shower I noticed in the mirror that there are large visable veins on my right chest that seem to link up to my fistula. It's like a road map.
Title: Re: Bad Fistula what next?
Post by: kitkatz on March 26, 2007, 09:26:46 PM
Maybe you are the A+ science experiment someone put together!
Title: Re: Bad Fistula what next?
Post by: boxman55 on March 27, 2007, 06:40:24 PM
boxman:

I know this one will be better, I have that vibe thingy going on :)

Please keep me posted, my fistula is doing good, it buzzing like crazy, I am about 3 weeks from the big pook :-\

Kim
Thanks Kim, The Docter called today and asked if I wanted to have it next thursday so it is moved up. I can't wait. :-\
Title: Re: Bad Fistula what next?
Post by: Treasure on April 01, 2007, 10:28:37 AM
Well, I had my little "science experiment" corrected by my wonderful surgeon, on Thursday. Dr. Spin summoned me to his office on Wednesday and said that he wanted to take care of this problem, asap, so in went for same-day surgery the next day.

 My fistula was flowing up into my jugular vein and up into my head, for some unknown reason. My surgeon rerouted it  at the upper arm and shoulder, so that it is flowing heart-ways, now. I no longer have a throbbing lump at the base of my neck. yippee!

Now I may be able to get my brain back together...back in December, I remember commenting (to everyone, and no one, apparently, hehehe, since no one did a thing about it) that I felt the way people described when they had had a stroke. With that added pressure relieved, I should now be able to pull all A's on my finals...hehehe... gotta love that logic, hehehe.

I'm just glad that disaster has once again been averted. Whew!
Title: Re: Bad Fistula what next?
Post by: jbeany on April 01, 2007, 11:08:49 AM
That's good new, treasure!  Good luck on the finals, too!
Title: Re: Bad Fistula what next?
Post by: goofynina on April 01, 2007, 11:24:05 AM
Whew, glad to hear it girlfriend, keep on keepin' on.... ;)
Title: Re: Bad Fistula what next?
Post by: Sluff on April 01, 2007, 05:33:43 PM
Thats great news Treasure, now no more excuses for no A's.  :2thumbsup;
Title: Re: Bad Fistula what next?
Post by: donnia on April 03, 2007, 02:25:31 PM
Just had mine done in the upper arm on 03/27/07... it has already failed   >:( 

This is the beauty I got for nothing.... granted.. this only 2 days old... hope it heals nicely!

(http://i99.photobucket.com/albums/l307/28bringinthewood/03-29-07arm.jpg)

Title: Re: Bad Fistula what next?
Post by: kitkatz on April 03, 2007, 02:30:50 PM
Can I say Owie!
Title: Re: Bad Fistula what next?
Post by: charee on April 03, 2007, 04:21:23 PM
Wow That looks so different from my upper arm one, I did have lots of bruising but wow thats a long cut. It looks very sore.
Title: Re: Bad Fistula what next?
Post by: donnia on April 03, 2007, 04:45:12 PM
It is very sore!  Hurts soooo bad!  I have 30 staples... I get them out Monday April 9th :'(
Title: Re: Bad Fistula what next?
Post by: Sluff on April 03, 2007, 04:52:19 PM
Can they do anything else with it or just redo it?
Title: Re: Bad Fistula what next?
Post by: donnia on April 03, 2007, 05:14:53 PM
My doctor said it is a loss.  Next step is putting a graft in 2 weeks before dialysis starts... :'(
Title: Re: Bad Fistula what next?
Post by: goofynina on April 03, 2007, 05:31:50 PM
Sorry to hear this Donnia,  wishing you Godspeed my friend... and remember to please keep us posted  :thumbup;
Title: Re: Bad Fistula what next?
Post by: Sluff on April 03, 2007, 05:38:14 PM
Try to remain positive Donnia. We are here for you.  :grouphug;
Title: Re: Bad Fistula what next?
Post by: boxman55 on April 03, 2007, 05:49:01 PM
Donnia- wow so sorry. my 2nd fistula surgery is Thursday I hope it works out this time. I am really sick of my catheter--Boxman55
Title: Re: Bad Fistula what next?
Post by: boxman55 on April 05, 2007, 01:22:44 PM
Just got home from surgery. so far so good. the band aid is only a couple inches long so the incision isn't that great. Now the wait begins again. It is very sore right about know though-Boxman55
Title: Re: Bad Fistula what next?
Post by: nextnoel on April 05, 2007, 01:24:26 PM
Just got home from surgery. so far so good. the band aid is only a couple inches long so the incision isn't that great. Now the wait begins again. It is very sore right about know though-Boxman55

Congratulations!  I'm so glad it has gone well so far.  Just don't take up arm wrestling, and all will be well. ;)
Title: Re: Bad Fistula what next?
Post by: goofynina on April 05, 2007, 04:57:03 PM
Hope it heals really fast Boxman55, take care and keep us posted  :2thumbsup;

Godspeed  ;)
Title: Re: Bad Fistula what next?
Post by: kitkatz on April 05, 2007, 06:44:58 PM
Now, you all no arm wrestling for the next couple of weeks.
Title: Re: Bad Fistula what next?
Post by: boxman55 on April 06, 2007, 08:22:05 AM
I don't remember my first fistula hurting this bad. It is probably compounded by it being my right arm and I unconsciously want to use it for everything. The percoset helps though.I feel a pulse right above the incision so I guess that is a good thing. Boxman55
Title: Re: Bad Fistula what next?
Post by: donnia on April 06, 2007, 09:55:11 AM
Good to hear that this one is working...  I'll pray it stays that way.  In the meantime... use the drugs.... thats what they are for  :2thumbsup;
Title: Re: Bad Fistula what next?
Post by: nextnoel on April 06, 2007, 11:03:40 AM
In the meantime... use the drugs.... thats what they are for  :2thumbsup;

"Better living through chemistry" - that's what I always say! :2thumbsup;
Title: Re: Bad Fistula what next?
Post by: boxman55 on April 06, 2007, 01:54:06 PM
so when they say take one every 3 hours for pain can I take 2 and get 6 hours >:D >:D
Title: Re: Bad Fistula what next?
Post by: donnia on April 06, 2007, 10:03:40 PM
Good to hear that this one is working...  I'll pray it stays that way.  In the meantime... use the drugs.... thats what they are for  :2thumbsup;

I dont know about ur first one, but mine hurts like the dickens!!!  I mean super bad!  It is killing me... I already had to get  a refill on my pain meds and I NEVER take all my pain meds!  Sux...and its all for nothing!
Title: Re: Bad Fistula what next?
Post by: boxman55 on April 07, 2007, 06:41:46 AM
Donnia, I know how you feel it is a struggle just to type. I am suppose to meet Sluff today I am afraid to take a pain pill because I will sleep and miss the meeting. Boxman55
Title: Re: Bad Fistula what next?
Post by: goofynina on April 07, 2007, 12:54:35 PM
Awww Boxman, i am sure it will be worth meeting Sluff,  i hope your not in too much pain during the visit and i hope you have a great time. Dont forget to post all about the meeting in our IHD Family thread  :2thumbsup;   after you are done THEN you can take your pain pill and sleep :P  well, inquiry minds want to know ;)
Title: Re: Bad Fistula what next?
Post by: Duane on April 17, 2007, 07:19:09 PM
My prayers to God goes out to all concerning fistula problems.
June 06 my fistula was installed (the latest design) so they said. I believe it now, thank God.

Surgery was on my right wrist about 1 1/2 in. long. Doctor gave me some pain pills to take along with instructions for care which i followed to the letter. Exercise the arm daily. No pain after the first day though.

By November 06 I was ready for dialysis. by february 07 had my fistula tested for the "thrill" and it was gone on the upper part of my vein. Had to have a balloon done on the artery. Working fine now.

My biggest concern now is my tech. she rushes and i always have to slow her down before sticking me. last to treatments i've blead from the stick point.

i'm concerned that she is not fully there as she needs to be for me and the protection of my fistula.

Donnia that picture of your arm scares me, it  doesn't look right. My prayers go out for you.

To sum it all up, my fistula is working just fine.
Title: Re: Bad Fistula what next?
Post by: boxman55 on July 03, 2007, 05:52:17 PM
well here it is time to finally get stuck. The first 17ga needle will be inbedded on Friday the 6th I am very nervous but at the same time I want to get rid of my cath so bad. They asked if I wanted a scrip for numb spray anybody use that?? Boxman
Title: Re: Bad Fistula what next?
Post by: kimcanada on July 03, 2007, 06:08:37 PM
Boxman, I use emla cream, and I decided at first to not use it and "just get used to the big needle" well that was a mistake, get the spray, or the cream, it numbs the skin and makes it all get easily,  you will be fine, just make sure you are numb   ;)

Kim
Title: Re: Bad Fistula what next?
Post by: boxman55 on July 03, 2007, 06:20:43 PM
Thanks Kim will it work on my brain too?? Boxman
Title: Re: Bad Fistula what next?
Post by: keefer51 on July 03, 2007, 08:13:30 PM
Boxman i had two fistulas that didn't mature. They were on my right arm. I now have a working fistula on my left arm. The first needle hurt. So i now use the cream. I found the best way to use it is put allot of cream all over the fistula at least an hour or more before dialysis. After the cream is on wrap it with saran wrap. Once you get there and before you get in your chair wash your arm and dry it. You will feel the numbness in your arm. The cream helps with the needle stick. Once the needle is inside you may have a burning sensation but it goes away. I wish you luck my friend.
Title: Re: Bad Fistula what next?
Post by: kimcanada on July 04, 2007, 07:48:36 PM
Nope it doesn't work on your brain, it took me about 3 weeks of making my blood pressure go sky high before I relaxed enough not to near pass out, deep breaths, my friend and you will get through it , that I promise!!!  That and the cream  ;)

Kim
Title: Re: Bad Fistula what next?
Post by: Bajanne on July 05, 2007, 01:17:35 PM
I never used the Emla cream although they gave it to me at the centre.  I kept forgetting to do it the hour before as I should have done.  I started with getting Lidocaine.  However, there are two disadvantages - when the lidocaine is going in, you do get a sting.  then, use of lidocaine toughens your skin.
After a while, I decided to just take the needle and after the first discomfort, all goes quite well.
Title: Re: Bad Fistula what next?
Post by: boxman55 on July 05, 2007, 06:33:44 PM
Friday 5:30pm the big stick first time getting cannulated (is that a word?) Wish me luck I will be spraying the ethyl chloride. The big brave guy  that I am. :boxing;  Boxman PS all the techs are like vampires it's like when they talk to you they don't look you in the eye they stare at your access ::) chomping at the bit to be first i think I am going to charge them ;D
Title: Re: Bad Fistula what next?
Post by: keefer51 on July 05, 2007, 07:36:21 PM
Goodluck boxman. I'll be thinking of ya.
Title: Re: Bad Fistula what next?
Post by: okarol on July 05, 2007, 11:01:49 PM
Friday 5:30pm the big stick first time getting cannulated (is that a word?) Wish me luck I will be spraying the ethyl chloride. The big brave guy  that I am. :boxing;  Boxman PS all the techs are like vampires it's like when they talk to you they don't look you in the eye they stare at your access ::) chomping at the bit to be first i think I am going to charge them ;D

Good luck Boxman - hope all goes well!
 :cuddle;
Title: Re: Bad Fistula what next?
Post by: boxman55 on July 06, 2007, 08:07:58 PM
well the anticipation of it was harder to deal with then the poke. The spray made it go pretty easy The hard part was keeping the arm in one place for 3-1/2 hours then holding it for another 15 min after your run is over. its a little sore right now but life goes on. Thanks guys for your thoughts it means a lot...Boxman
Title: Re: Bad Fistula what next?
Post by: kimcanada on July 07, 2007, 03:51:50 AM
Yippy first one is over!! :bandance;

My first place that I was at tied my hand to the chair, I didn't mind it but where I am now doesn't , you just get used to it, BTW why are you just 3.5 hours?  I myself is 4.5?

Kim
Title: Re: Bad Fistula what next?
Post by: boxman55 on July 07, 2007, 07:10:10 AM
Hi Kim, tying it down might be a good idea. All I thought about for the entire run is "don't move" It is sore this morning and it is more to deal with then the cath but the cath has it's draw backs too. I can leave quicker with the cath but dealing with it for every day showers and no swimming and on and on is a pain. I guess both ways suck, hows that ;D
I can not answer your question about run time. When I started dialysis on Aug 14th '06 that was the time set and it always has been. I will ask my neph next time he comes around to collect his fee.   have a great weekend...  Boxman
Title: Re: Bad Fistula what next?
Post by: thegrammalady on July 07, 2007, 09:09:22 AM


My first place that I was at tied my hand to the chair, ...


Title: Re: Bad Fistula what next?
Post by: boxman55 on July 14, 2007, 08:46:06 AM
Well last night was the first time they stuck me with both 17ga. needles. I guess I was infiltrated on the top or venus because my arm started to hurt like hell. They stopped flow in that one and switched back to the cath. It is now Saturday and my arm is pretty sore and black and blue. I guess ice will be my friend today. I am not liking this...Boxman
Title: Re: Bad Fistula what next?
Post by: kimcanada on July 15, 2007, 06:03:40 PM
It does seem like alot of work for nothing doesn't it, just remember that its a better dialysis in the arm and they will get much better clearances, thus you will feel better... blah blah blah yadda yadda yadda

Here is what my arm is looking like right now, its very badly bruised but I still think the fistula is a better dialysis, maybe they brainwash us    :urcrazy;




EDITED: Resized pictures - Sluff/ Admin




Title: Re: Bad Fistula what next?
Post by: del on July 15, 2007, 07:46:11 PM
Hubby's fistula infiltrated a couple of times first when they started using it.  Seemed like it toughened it up..  Has had the same fistula for 7 years now.I have been needling him for a little over a year now and not one infiltration!! :thumbup;
Title: Re: Bad Fistula what next?
Post by: kimcanada on July 16, 2007, 05:16:09 PM
When it first happened, I didn't think it would bruise, the nurse said yep it will, anyhow it looks way more painful then it is, I will tell you that every time she misses my veins or this happens I wish I had enough guts to needle myself. :boxing;
Title: Re: Bad Fistula what next?
Post by: del on July 16, 2007, 06:28:41 PM
Are they going to start buttonholes??  That would make it easier for you to needle yourself.  Hubby can needle himself but lets me do it.
Title: Re: Bad Fistula what next?
Post by: kimcanada on July 17, 2007, 04:53:33 AM
No button holes in the works yet, I asked when I was first transfered to Antigonish, and their jaws dropped just because I knew what a buttonhole was, its a brand new unit, and I think that in time we will do that.
Title: Re: Bad Fistula what next?
Post by: boxman55 on July 17, 2007, 06:34:24 PM
hey Kim, I guess the black and blue is normal. I had the nurse tell me she has seen worse when I showed her my arm. I also had a tech tell me that my fistula was one of the nicest she's ever seen. I looked at her softly and said "your the first person that's ever said that to me" laughs all around . My run Monday was uneventfull so I am feeling a little better about the needles even though the arm is still sore. Like you said better clearence oh boy!...Boxman55
Title: Re: Bad Fistula what next?
Post by: kimcanada on July 19, 2007, 04:40:20 PM
Well you have to have something thats the nicest  :2thumbsup;

I can tell you boxman that it does get easier, I thought there was no way that it would get better, but low and behold it did!

Kim
Title: Re: Bad Fistula what next?
Post by: boxman55 on August 09, 2007, 06:51:40 PM
just a follow up it has been 3 weeks now using the needles we have moved to the 16ga I had one additional infiltrate but otherwise just business as usual....Boxman
Title: Re: Bad Fistula what next?
Post by: Black on August 09, 2007, 08:00:28 PM
Glad it has been going better.  Are you using buttonholes?
Title: Re: Bad Fistula what next?
Post by: Sluff on August 09, 2007, 08:26:27 PM
Good 4 u Box. Glad things are improving! :thumbup;
Title: Re: Bad Fistula what next?
Post by: boxman55 on August 10, 2007, 07:08:40 AM
Glad it has been going better.  Are you using buttonholes?
no I am not. they just stick me where ever they want from the bend in my arm to half way up my bicep....Boxman
Title: Re: Bad Fistula what next?
Post by: kimcanada on August 14, 2007, 03:08:49 AM
So do you mean that your needles go in the top part of your arm?  Mine are in the bottom part.  Its hard to believe that those needles get "normal" hey?

Kim
Title: Re: Bad Fistula what next?
Post by: boxman55 on August 14, 2007, 06:19:19 PM
So do you mean that your needles go in the top part of your arm?  Mine are in the bottom part.  Its hard to believe that those needles get "normal" hey?

Kim
Hi Kim, yes the vein is bulging out from on top of my muscle so they stick me there. I am still using the 17ga but they say if I want my cath out I have to progress to the 15ga and have a couple weeks of good runs before they will remove it. Soooo I got a suck it up and let them plow me with the big sticks..Hope you are OK  Boxman
Title: Re: Bad Fistula what next?
Post by: kimcanada on August 15, 2007, 10:47:07 AM
Well I will tell you there isn't a great difference between the 17's and the 15's,  and now that my cath is out,  I can't even imagine what it was like with it in there.  I haven't swam in years, but after having a cath and not being able to swim, I have swam 10 times since the thing came out!  Anyhow you are doing fine, and it does get easier. 8)

Kim
Title: Re: Bad Fistula what next?
Post by: boxman55 on August 16, 2007, 08:10:19 AM
Swimming and taking a normal shower would be nice things to be able to do. So bring the big sticks on....Boxman
Title: Re: Bad Fistula what next?
Post by: boxman55 on August 28, 2007, 06:32:40 PM
running with the 16gaugers. So far all is OK.......Boxman
Title: Re: Bad Fistula what next?
Post by: kimcanada on August 29, 2007, 11:55:25 AM
 :clap;

All right!!
Title: Re: Bad Fistula what next?
Post by: boxman55 on September 16, 2007, 04:47:24 PM
The catheter has been taken out. I can shower like a normal person. Ohh the small things in life....Boxman
Title: Re: Bad Fistula what next?
Post by: kimcanada on September 19, 2007, 03:27:42 PM
Awesome!!!!

I cried the first shower, I am not to sure how I woke up for 4 months!