What was your GFR when you got a fistula?????

[KidneySinger]

Hi
History:
Generations of some kind of late hitting Alports.  2 generations ago: all uncles (3 or 4) died in 20's -  last generation: 2 uncles transplant by 40 with donation from sisters (Alports confirmed) -  this generation: My younger brother started dialysis at 46 - I'm 3 years older, just hit 50 and about to get a fistula.
Question:
My GFR just hit 21 and my Mayo neph. is insisting i do a fistula to prepare.  I am scheduled for surgery in January. My GFR was about 27 a year ago.  I'm not a candidate for whatever they do in your lower groin because of multiple groin surgeries after pencil stab as child to my abdomen.
I thought nothing of it but some are saying they think it is too soon?  Is it?  How long can you have a fistula and not use it?  It seems it may still be a couple of years possibly before I need to use it.  My younger brother got in trouble though for not getting his done in time and was very sick when he started dialysis.
Just wondering what others think here as you are all pros 
Thanks
Calvin

[kellyt]

I think I was around 10 or just below.  Maybe even 7.  I still felt relatively well even with a low GFR.  Very fortunate.

[galvo]

8

[cattlekid]

I would agree with those who say get a fistula placed before you need it.  My kidney function went from 90% to 10% in the space of three months.  No time for a fistula so I had to have a permacath.  I just got a fistula now and I see the benefit of having one. 

[cariad]

I was transplanted with a GFR around 12, no fistula placed (doctor wanted me to get one the year before but I refused).

My only concern for myself with not wanting an access placed too soon was because there are a limited number of spots that can be used for these, and I wanted to try to make it to transplant without getting a fistula. Two of my access sites were used up in childhood. If you are only 50 and considering staying on dialysis for the rest of your life, you are going to want to realistically consider how many accesses that could entail. Of course no one can tell you for certain, there are people who use the same access for decades, but others who have poor luck with them and need them replaced periodically.

I assume you mean you cannot do Peritoneal Dialysis? Groin would be a possible site for a hemo access, but most consider that a last resort. Your doctors have done a vein mapping to determine the best place for your access, and that you have good enough veins for a fistula, right?

You're GFR will probably rise and fall throughout the rest of your kidney decline. You could have a blood draw next month and your GFR may be 23, then six months later it may fall to 18. It is normal and expected that labs will jump around like that, and this situation could go on for years and years.

[KidneySinger]

Wow, I'm so confused.  Everything I read you are practically dead below 10?  You are just getting a fistula at 10 and below with a 4 month healing time?
So with 21, should I fight my doctor to hold off?
Yes, sorry, I meant PD - can't do it.
I did have my vein mapping done - pretty great to see the technology up close compared to when I actually thought this was going to happen...about 40 years ago.
My mapping showed it would be best to do in the upper arm.
Has anyone done this at 21.  What I read on some of the things online, it is best to do it early?  And can your fistula last for years with no use?
This is Mayo Clinic...I would think their Nephs are great and wouldn't steer you the wrong way?
Thanks again

[MooseMom]

Calvin, I had been bopping along with an egfr in the low twenties for at least 7 years, but once it dropped below 20, my neph wanted to prepare me.  I was referred to a transplant center for evaluation and I was referred to a vascular surgeon for mapping/fistula creation.  Now, I could have refused if I had wanted to, but neither my neph nor I knew when I would need to initiate dialysis, and he didn't want me to start on an emergency basis.  I had my fistula created in April 2010, and here it is almost 2012, and I have not had to use it yet.  So, yes, you can go for a long time with a fistula and not have to use it, and no, your neph probably doesn't have a crystal ball that will tell him exactly how long it will be before you start dialysis.  This is always the $64,000 question.

If you can determine how quickly/slowly your renal function will deteriorate, that will guide your decision.  But I don't know if you can really know that.  There would be no harm in getting it now and not having to use it for several years.

I really dislike my fistula.  I find it annoying, and it generally pisses me off.  But I'd much rather have it all ready to go than to have to get a cath shoved into my heart...

[KarenInWA]

My neph wanted me to get my fistula at around 20-21, and I wish I had listened to him!  I ended up getting it at 8, or maybe it was 6 since I had a blood test hours after the surgery. The next day, I went in for one of those chest caths MM mentioned above, and by Friday of that week, I was hooked up to a machine. Had to build the fistula up, started using it in June (surgery was in April) got cath removed in early August. My GFR never bounced back up once it started going down. I was hoping it would! I honestly thought I had more time, but alas, for me, that was not the case. A year ago on Dec 1st, I went in for a transplant eval w/a gfr of 19.  By March, it was 13, in April - 8. Then in less than one week, it dropped down to 6.  Now I am recovering from my transplant surgery that I had on 11/23! A very kind and very healthy relative stepped up and offered to donate to me. I am truly blessed.

KarenInWA

[kellyt]

KidneySinger, although my nephrologist was on top of my lab work, he really was going off how I felt and I felt quite good.  I was tired and had some muscle weakness, but that was about it.  I never lost my appetite, got headaches, nothing.  Towards the end, before transplanting, I was seeing him monthly and having labs done every time.  After each visit he would say "Call me if you lose your appetite, get headaches, feel nauseous, etc."    The morning of my transplant my GFR was 7 and my creatinine was 5.1.  I felt good that morning, too.     My neph would always say he didn't want to start me too early, but the didn't want to wait too long.  Both could be hard on me.

[KidneySinger]

 Thanks everyone.  Very helpful info.  I guess there is no way to really know and since my younger brother went through hell by not having a fistula ready, I guess it is the best thing - even if you won't need to use it for years.  I read about some getting one and using after 8 years with no issues at all.
Thank you again!

[kellyt]

I got my first fistula the end of Sept 2007.  It didn't work so I got my 2nd fistula one month later.  I never used it and transplanted Nov 5, 2008, and my fistula stopped working the day after my transplant.   

[malaka]

My neph explained it really simply:  it is better to have a fistula and not need it than it is to not have a fistula and need it.   So mine was done at about 17.  It depends, of course, on your rate of GFR increase.   Mine was fairly slow, so he waited.  BTW, getting it done was no big deal. 

[big777bill]

 I just got my fistula done on 11/17/11 and my GFR was 18-20.

[Mr. B 123]

My eGFR was at 8 when I went into the hospital for a week in March 2011 and after several trips to neph. for blood tests we decided to get the fistula in June so it would be ready to use if I needed it.  Last blood work the eGFR was at 25 so I just keep an eye on the fistula to make sure it is working and wait for next blood work.  I read some where a person had a fistula for 10 years before they actually needed it.  Good luck!

[rfranzi]

My neph wanted me to get my fistula at around 20-21, and I wish I had listened to him!  I ended up getting it at 8, or maybe it was 6 since I had a blood test hours after the surgery. The next day, I went in for one of those chest caths MM mentioned above, and by Friday of that week, I was hooked up to a machine. Had to build the fistula up, started using it in June (surgery was in April) got cath removed in early August. My GFR never bounced back up once it started going down. I was hoping it would! I honestly thought I had more time, but alas, for me, that was not the case. A year ago on Dec 1st, I went in for a transplant eval w/a gfr of 19.  By March, it was 13, in April - 8. Then in less than one week, it dropped down to 6.  Now I am recovering from my transplant surgery that I had on 11/23! A very kind and very healthy relative stepped up and offered to donate to me. I am truly blessed.

KarenInWA

Wow Karen, so good to see you on here and to hear that your surgery went well. All the best to you and happy holidays!

[MomoMcSleepy]

I think it's great that the doc is getting you ready, I feel like my doctors screwed around, and barely paid attention to me til I called ands said sometimes (not always) I make less urine than usual.  And I also felt sock, with palpitations and weird breathing after exertion, etc.  He bumped up our clinic visit and told me I needed to get ready for dialysis in 6-12 months cause I went from gfr of 17 to 15 in a month and my kidney function was declining faster.

I had always read that at stage 3 you prepare for dialysis.  I was diagnosed already in stage 3, and no one said anything about it.  I think it's good to prepare, it can to fast once you reach that point of no return, or get a and infection.

my A/V fistula surgery is Friday the 13th (April), the next day is my big birthday party!  I have to get an upper arm as well, and have too much scarring for PD.

[adairpete]

I, too, think it's best to be ready.  It takes time to be able to use a fistula and they might need to "revise" it if it doesn't work (not good enough blood flow like mine).  I wish I'd had a fistula ready so I didn't have to do the sub-clavian catheter.  Then when I did get a fistula, it never worked.  I'm on PD so I don't need one (knock on wood).  I also knew someone who had a fistula placed (that did work) but never actually used it and had it for years.  Best to be a Boy Scout and "be prepared." 

[lainiepop]

Hi, my kidney deteriorated from 23% to 17% after the birth of my daughter in July last yr, and they started talking about testing for donors but co-one said anything about fistulas. The idea was i'd hopefully have a live donor transplant b4 the need arise. Fast forward one mth and the gfr is down to 10. So we have dialysis talks but nothing is done, 5mths down the line gfr is stable at 10% im not unwell, still no fistula and dad is a match. Op is scheduled for 29th may, my gfr is 8.8% now but there's no point me having a fistula, they dont want me on dialysis at all if im still eating and generally well as im having the transplant, if i need it i'll have to have the temporary neck line. So every circumstance is different and my docs were very happy to leave me as long as i feel well and am eating.