When did you get your fistula?

[paddbear0000]

I'm curious as to when everyone's doctor told them it was time to have their fistula surgery. I don't mean in emergency cases tho. I'm in the process of switching nephrologists (again--this is the third one in 3 1/2 years), but my last one never mentioned a fistula. When i last saw him about a month and a half ago, my function was 19% and he told me he didn't need to see me for a year! Shouldn't someone have told me to get a fistula started by now? My function a month ago was 14%. I don't know what it is right now,  but my new neph appt. is next week.

[jbeany]

I went in for surgery a year before I started dialysis. - and it was good thing I started on it long before I needed it, since it took 3 attempts to get one that worked.  I also stalled on starting for quite a few months after the doctor wanted me to start. 14% seems to me like it's past due for getting it placed.  If you get a natural fistula, it will take a while for it to heal up and be usable.

Have you decided on PD vs hemo?  Not every doc suggests that you get a hemo access if you want to do PD, although quite a few of them do prefer it. 

[Joe Paul]

I was told to have my fistula done, what my Neph thought, would be a year before I needed it. It turned out that 3 weeks and a day after I got it, I had to start using it. I believe that was possible because of exercising the fistula with the ball ASAP. This coming May will be 3 years, and my fistula is doing great. With kidney failure, you never know when the bottom will drop out. I would ask about getting your fistula soon, better to have it and not need it, than to need it and not have it. 

[paddbear0000]

Have you decided on PD vs hemo?  Not every doc suggests that you get a hemo access if you want to do PD, although quite a few of them do prefer it. 

I'm actually trying to get a preemptive kidney/pancreas transplant done. I just finished all the testing to get listed. Now I'm just waiting to hear. At OSU Medical Center, their average wait time for a k/p transplant is 6 months. I was hoping to get one before the need for dialysis, but I have a feeling it may not work out that way.

If I do end up having to do dialysis, I'll do hemo. I have enough trouble controlling my blood sugars as it is, without the added glucose in PD.

[staceyand joe92]

I went from 15% to 5% in two weeks with PKD.  I asked my neph constantly about getting a fistula. My first neph told me it was too early. I relocated from TX to AZ with my husband (Army) and my new neph said to wait also. Then came the big drop in GFR and now I have a chest cath and dialysis. I am waiting for mapping with the Vascular surgeon next week for a fistula. I wish I would have taken more control and demanded having the surgery for a fistula earlier.  I am finally on "the list" and have a few living donors that are being tested.

[monrein]

I had mine done about a month before starting and thought I'd be able to hold off until it was ready.  However, I ended up with a permacath for a few months and wish I had not had to have one of those.  My personal opinion is that I would have it done and ready to go, especially if you don't have a living donor.  Some people like their permacaths and some even think that's it's fine to use one for years.  I disagree and so do all the medical people that I've talked to.  Of course, if you need to do emergency dialysis, as I have twice, they are essential and thank goodness we have them as an option.   

It seems a shame that your neph is not more helpful with guidance in this area.

[Jess21]

I started dialysis on an emergency basis, and also my neph thought my kidney function would come back, so I started dialysis in November and didn't have the fistula surgery until March.  Then again, my neph didn't want me to have the huge scar if I didn't have to.  They started using it 7 weeks later.

[paul.karen]

Paddbear,
Good luck on your transplants going throgh.

Here in Jersey they wont even put you ON THE LIST until you have already started Dialysis.
You can sign up for the list early.  But if a kidney were to come along and you hadnt started dialysis yet it passes you by :-(
Not sure why we do it like this.  But we do.  And our waiting list is like3/5 years long.

I wish you the best.

P&K

[boxman55]

I went into the hospital and had a catheter put in used it for almost a year had first fistula operation about 3 months after I started dialysis. When it failed before I had a chance to use it I switched Doctors and had vein mapping and then a second fistula which has been working ever since...Boxman

[Ang]

Fistula nov 05

dialysis  june 06

transplant  Any  bloody  day  know.

[jbeany]

If I do end up having to do dialysis, I'll do hemo. I have enough trouble controlling my blood sugars as it is, without the added glucose in PD.

I went on hemo for the same reason.  Plus, the doc said I'd probably gain a lot of weight with it because of the diabetes - I needed to lose it, not gain!

[paddbear0000]

Eeekk! I definitely don't want to do that. After losing 30 pounds a few years ago, I have a great fear of gaining it back!

[wrandym]

I got mine in the beginning of November.  I was at 18% at that time and the hope was that I could last 6 months before going on to dialysis while the fistula matured.  Right after the fistula surgery, I swelled up like a balloon.  I could not even close my fist.  I thought I had bronchitis, but it was fluid build up.  I ended up in the hospital and I was at 13% function.  This was within 10 days of the fistula surgery.  Now I have the catheters sticking out of my chest.  I keep wondering, If I give them a yank will a parachut come out of my back or will I blow up into a rubber raft...all these unanswered questions...

[paddbear0000]

I keep wondering, If I give them a yank will a parachut come out of my back or will I blow up into a rubber raft...all these unanswered questions...

  As today has not been a particularly good day, thanks for making me laugh!

[monrein]

Sending you a not-particularly-good-day hug, Paddbear.   

[paddbear0000]

Thanks!

[skyedogrocks]

Rob had his fistula put in right when he went on dialysis.  I really wish he got his before he needed it, things would have been so much easier on his body.  He went through about 6-7 catheters because he kept getting infections.  You know what infections can do to a diabetic, it was just horrible.  His last catheter infection landed him in the hospital for a week.  His infection was so bad and it came on him fast.

My advice is to get the catheter ASAP.

[Lucinda]

I got my fistula exactly two years ago today and I was told I would be using it shortly after that.  Few months at the most.  Still not on dialysis two years later but really pleased I have it here if I need it.  I would get it in just to be on the safe side and you will feel more secure knowing it is there. x

[Restorer]

I was told by my nephrologist that I should start looking into getting a fistula back in April. I had a vascular imaging in early May, but then decided to go with PD. I would have started PD in late August, but my catheter didn't work and had to be replaced, so I ended up starting eventually in late September.