Fistula

[Wat76]

Hello, I am a PKD patient and I am scheduled for surgery 0n 18 May to get my fistula.  I am so scared.  Have a couple of questions for those who have a fistula.  Is it really that bad and how long did it take before you had to began D.  I was told that in 6 months or so you will need to start D.  Has anyone with PKD had their fistula a long time before starting D.  I am seriously thinking about calling today to cancel my surgery for tomorrow, that is how scared I am.  Also does it take long to heal.  I drive an hour to work and back.

[cloud393]

I have PKD but started D before I got the fistula.  I actually started on Peritoneal Dialysis.  That worked ok for about 6 months and then I had alot of problems so decided to switch to hemo.  The fistula surgery was simple, out patient with a general anesthesia.  We didn't start using it for hemo for about 10 weeks so I had to use a perma-cath (in my chest) until then.  The only down side to the fistula is not being able to lift much with that arm.  You have to watch what you do with it so you don't damage the fistula.  So what are your lab numbers looking like?  Creatinine? How do you feel overall?  Maybe you won't need D for quite a while yet.  When were you diagnosed with PKD?  I knew I had it for 20 years before needing D.  I don't think you need to be scared, being prepared is the answer.  Going to work shouldn't be a problem either.  Well, I will have you in my prayers tomorrow.  Good luck and let us know how things go.

[RichardMEL]

dude do NOT cancel the surgery. The longer you have the fistula in the more time it will have to mature.

I had mine over 2 years before first use, which was really good I've had very little problems with it.

As for the surgery - nothing to be scared about - in the grand scheme of things it's actually pretty minor, and for me didn't hurt at all(others may differ on that). It was weird to get used to for a little bit, but I hardly notice it these days.

Go ahead with it!

[Quickfeet]

The surgery isn't very bad. You can be up and about the next day. Take it easy on your fistula though.

[lunadatura]

Dude this is not even major surgery. It can be done under a local if you want to. I did it that way so that I could drive myself home and I even went back to work the same day. Its not a big deal. I did not have much pain - nothing that a little tylenol couldnt handle. Please go to the surgery and get your fistula working - its important so that you dont end up in ER getting emergency catheter in your chest/jugular.

[monrein]

I had no trouble with either of mine and it is a real advantage to have enough time for it to mature.  We're all different but not getting a fistula is not a good decision if it's hemo you'll be doing.  When things are new of course it can be scary but you can do this.

[sullidog]

Get it it's your life line! I am on my second graft but that's cause I can't get a fistula, the pain is minimal and can be controled  by tylenol. The only difference is my doctor kept me over night do to the tunneling the he did, but I'm not sure if all doctors do that.
Troy

[Wat76]

Thanks for the encouragement i went ahead with the surgery it was not as bad as i thought. my arm is in pain but other than that all is well. i hope the first step was the hardest. thanks for all kind words.

[Wat76]

Hi All,

Just returned from my follow-up appointment, as I explained earlier, i have never felt anything with my fistula., nothing that everyone was describing, Well I have to have another surgery, the first placement did not work, when they told me it was not working, i bust out crying.  They are going to put it in my upper arm, same arm.  Don't know what happended and you talk about upset, i am very upset.  It took a lot for me to go in and get the surgery, now it has to be done again.  I am devastated. Have this ever happen to anyone else.

[MooseMom]

oh, no!  Oh Wat, that's terrible news.  I know what you went through to get yourself into surgery, and to have this happen...Oh, I am so, so sorry.  When I read your post, I just was so upset for you.  Where exactly is the fistula now?  Do they have any idea why it didn't work?  And can they use this information to ensure that the next one will?  I know this isn't going to help you now, but having the first fistula not work isn't really all that uncommon.  My mom had surgery 5 years ago to repair an aortic aneurysm, and she lost her kidney function during the surgery (this is an uncommon but sometimes seen result of this sort of surgery).  She had to use a catheter for 18 MONTHS because they couldn't get a good working fistula.  I think the surgeon she went to was a hack, so she ended up going back to the cardiovascular surgery practice that did her aorta, and the fistula (upper arm) she has now is brilliant and works very well...and this is in an elderly woman.  I tell you this to reassure you that this situation is very upsetting but not insurmountable.  Do you have surgery scheduled already?

On the upside, I am glad you found out about this now instead of finding out the day you start D.  Oh Wat, I am so very sorry this happened to you.  To think it was all behind you, and now this.  You know you have the support of all of us, and together, we're going to help you through this.

[mikey07840]

Hi All,

Just returned from my follow-up appointment, as I explained earlier, i have never felt anything with my fistula., nothing that everyone was describing, Well I have to have another surgery, the first placement did not work, when they told me it was not working, i bust out crying.  They are going to put it in my upper arm, same arm.  Don't know what happended and you talk about upset, i am very upset.  It took a lot for me to go in and get the surgery, now it has to be done again.  I am devastated. Have this ever happen to anyone else.

I am sorry that you had a problem with your first surgery. I also had the surgery on the lower arm that never worked. They did the second surgery on the upper arm and it works great. Hopefully you will also have good results with the second surgery. Hang in there.

[Wat76]

Hi EveryOne,

First, I am a 52 year old female, not a Dude.  I will have my second surgery on Jun 15th for the upper arm fistula.  So not looking forward to it, but looking forward to getting it out of the way.  Not as scared as the first time, a little antsy, but not afraid.  I just pray that all goes well this time.  Thanks for the support from everyone, especially MooseMom.  Will update after the fistula is inserted and working.  Take Care.

[monrein]

Best of luck with the upper arm fistula surgery on the 15th.  It's always a disappointment when any surgery doesn't go as it should and we're already so stressed out with the whole ESRD thing. 
Please let us know how things go after the 15th. 

[murf]

I can vouch from first hand experience to look after your fistula. About a week ago, I knocked my fistula and it has stopped working. Need to replace it as it was too late to save it. As for the surgery, it really is a doddle. Nothing to it. In and out on the same day or just an overnight stay.

[scaredwife]

Best of luck with the second surgery. Please let us know how it goes.

[RichardMEL]

Wat76 - my apologies on the dude part - but everyone can be dudes if they put their minds to it!! 

Murf - wow really? how hard did you knock your fistula? What happened? I've knocked mine a few times accidently and freaked out thinking "oh no!" but it's been really great (the nurses say something about by nice big... hard... fistula...  )... I'm so very sorry yours failed.. that's really horrible - but a really good reminder to all of us to be extra careful with these things!

[murf]

Some late news about my fistula. Scans have shown that my fistula is clogged. My neph specialist believed it is to do with my fluid restrictions. Since being on PD, I have been TOO diligent with my fluid. As a consequence I have increased the viscosity of the veins. My HB is currently running at 156. See the surgeon on Wednesday. Looks like I have to have a new fistula. Will know more later and will keep you informed.

[MooseMom]

It is very early in the morning of 15 June, and I know that today Wat will have surgery to create a new fistula since her first one failed.  Let's all keep her in our thoughts as this is a rough time for her.  I hope the op is a success this time.

Murf, we'll be thinking of you on Wednesday and will hope that you'll have some good news to report.

[monrein]

I'll be thinking of them both and hoping for the very best outcomes.   

[Quickfeet]

Mine also clotted after a week. I hope everything went well with the second op. If you have small veins and your fistula is in deep, you may not be able to see or feel it. My doctor used one of these baby heart checkers that they use on pregnant women.

[Wat76]

Hi All,

My surgery went well yesterday, in a lot f pain, will not know if it is working until next week. As of today I still do not feel any vibrations or movement.  The nurse use a machine and said it was functioning before i left the hospital, time will tell.  I hope this one works.  I was not as crazy as I was the first time.  Thanks to all for your support and very kind words. 

[Wat76]

New thread.