to late for fistula

[BRANDY]

Im worried about being to late for  fistula.  do they do emergency cath on neck and can use it imediately or what happens if kidneys fail all of a sudden.   I dont have a fistula yet  and am at 21%  We havent even had a talk about it   I have learnt from all of you dialysis patients  and you have educated me on the matter.  I have a appt next tue  will put some questions to him  if I remember these.I know  write it down   well the problem with that is I forget my list    

[Meinuk]

Hi Brandy,

I didn't have my fistula placed until I was at 15% GFR, and then I didn't start using it for a year and a half.  Dialysis can be started immediatly after permcath placement in your neck, should the need arise.

Your Nephrologist should be talking to you about various forms of dialysis/renal replacement therapy (Hemo, home hemo, PD and transplant), in most centers, you can be listed around 20% if you decide to pursue transplant (that will buy you some time on the list) or if you have a living donor, you can be worked up at this stage as well.

If you feel that you don;t have a relationship with your nephrologist where you can talk about the future, then (insurance willing) you should look for another nephrologist.  At this point, learning as much as you can will help you so much, and when you feel in control of your future, it can help with the onset of CKD5.  We call this empowerment.  You literally become a part of your medical team.  And working on your diet can sometimes slow the progression of CKD5. 

When you have a question, post away.  The members here are an amazing resource, and a lot of fun as well!

IHD is a great place for information and support, there is also Kidney School  http://www.kidneyschool.org/splash/toc.shtml?gclid=CNCD5tS98JYCFQECGgodtHPOqw

[paris]

I have been at around 15% for over a year, slowly coming down from 20% the past three years.  I don't have a fistula yet.  Since the process has slowed down, we are waiting.  So, it all depends on how you are doing and what you and your neph feel is right for you.   Keep asking him questions.  Are you comfortable with your doctor and trust him?  That  is important.  Let us know what happens.

[Wallyz]

Yeah, they willl do both at once if it is an emergency.  You can demand more clarity about the schedule from you doc, though, and if you are convinced you will need one,go ahead and push for it.

[G-Ma]

yes, they put my permcath in and started using it 1/2 hour later and I finally had a fistula to use 9 months later..I have learned to talk to everyone and ask questions.

[boxman55]

I used my cath for over a year while I was trying to develop a fistula. I have been using the fistula now for 15 months. The cath was put in the same day I started dialysis. If you want to get a fistula early I would...Boxman

[BRANDY]

Thank you , you people are wonderful  you answered my questions so I can understand and I dont have any doubts about  my situation.  The placement of fistula was heavy on my mind  I didnt know if I did go into  failure could they do anything about it ,..   One more question   Why do some people pass away  when in hospital  aand they say it was kidney failure .  is there a reason they dont cath them  or is insurance.  I hope this makes sence.  I have too many questions  but I know yall have the answers thanks  again

[jbeany]

If someone dies from kidney failure, they may have chosen not to start dialysis.  It is life support, after all, and not everyone wants to take that step.  There's also a difference between chronic and acute kidney failure.  Chronic means a gradual failing of the kidneys. There's time to consider all your options, and learn about treatments.  Acute might be caused by trauma, such as a car accident, or something similar to a poisoning, where the kidney function stops because of a toxic substance in the system.  In an acute case, there might be other problems that would cause eventual death, so they don't start dialysis because it would simply be prolonging the person's suffering.  If the kidneys fail first out of all the other possible problems, then that's what is listed as the cause of death.  Also, what is written as "cause of death" on a coroner's report isn't always what a layman would put.  For example, if someone is in a car accident and in a coma, and their kidneys shut down because of the trauma, the kidney failure would be listed as a cause of death, not the car accident.
You can also read a few accounts on the board of a few people whose kidney failure went undiagnosed until the symptoms were so bad that they need emergency treatment.  It's certainly possible to be untreated long enough that even dialysis would not pull you back from the point of no return.  A body can only take so much punishment.  The cause of death then would also be listed as kidney failure.

Gee, now wasn't that cheerful. . .

Really, if your kidney function takes a sudden dive, you don't need to worry if your fistula isn't ready.  They can have a cath in and have you on treatment in a matter of hours.

[boxman55]

Thanks for that jbeany. Ugh...Boxman

[paul.karen]

Brandy My Neph only told me about hemo.  I learned of CCPD here at IHD.  I like this idea myself much better.  When i brought it up with my Neph he said this is fine.  If i were to get a fistula he said that takes alot of time to heal.  Where as the Cath i will be getting can be done a week or two before i begin treatment.

Do you know if you want to do treatments in center or at home?
Read up or ask about options you have.  You will get real answers here whe
re as in a differnt enviroment you may only get the answers best suited to your doctors.
P&K

[aharris2]

One further comment:

Catheters damage the blood vessel. If your kidneys are failing gradually then ENCOURAGE your nephrologist, etc. to arrange for  fistula or graft placement in plenty of time for healing (and maturing in the case of a fistula) prior to the start of dialysis. It is a little bit of a guessing game because of changing rates of decline and different rates of healing/maturing and you don't want it placed so far ahead of time that it fails prior to even starting dialysis. But, if your doctor plans on having you start dialysis with a catheter, your care is being mismanaged.

Catheters should only be needed for surprise kidney failure or access failure. And, many do not agree with our position on this, but Rolando has opted to continue to use the catheter that was placed after the last access failure 3 years ago. He started dialysis with a catheter (who knew? IHD had still not been born at that time) followed by graft placement. After the failures of 3 grafts and one fistula spread out over both upper arms and with 4 different catheter insertion points in between failures and the resultant blood vessel damage, Rolando has opted to maintain the last catheter site. The same catheter lasted for two years before it suddenly fell most of the way out. He was able to have a new catheter inserted through the same tunnel. Same tunnel, no new damage to the blood vessels. He will keep using the catheter and the same tunnel until there is some overriding consideration which makes him opt for something else (such as home hemo.)

One issue with dialysis is access - it is possible to run out of access points for dialysis. Don't let them damage your blood vessels unnecessarily!

[BRANDY]

I have been listening to you guys talk about clinical hemo  I think that sounds better. I think maybe later after I get used to hemo  I will want to do it at home .  You can switch over later cant you . but the needles scare me abit.  But I dont want a catheter bag  with the peritonial  or tubes   or the bloating  if Im wrong please tell me   the best side of both  and the draw backs of them.Thanks for all responses

[502Blues]

Catheters do damage the blood vessels, i will never let them put a cathater in me again

[502Blues]

I posted a thread, temporary catheters and stents that talks about all the problems catheters  have caused me

[BRANDY]

502 blues--- I tried to find your post on catheters and I coudnt find it .  I did read some that had problems with cath. How long have you been on hemo.   are you in clinic or home 

[BRANDY]

I just found your post I was looking for, yes you have had a bad time with the catheter.   It sounds like hemo is best.  It is scary to think you have got to insert needles   but I guess you get used to it .  I am diabetic and for 34 years I took shots  now I am on a insulin pump.  It is wonderful,   

[RichardMEL]

BRANDY - worry not. 21% GFR is still a fair way off needing the Big D, and it also sounds like you have fairly chronic KD rather than acute, so it's unlikely to colapse in a heap rapidly. Certainly my fistula was put in when I was 10-15 GFR and even then I didn't start till over 2 years later when I was at 6. By that time the fistula was nicely matured They usually take 6 or so weeks to get to a state of being useable. If you're at all concerned about getting an access put in, and yes the fistula is the BEST sort of access for hemo, then by all means talk to your neph about it - it's not a difficult procedure dont pretty quickly and you can let it sit there.. but hey you might also want to look into pre-dialysis transplant and that sort of thing, which means you might not need an access at this point. I reckon discuss all these issues with your neph. If you're at all concerned your care team is the first place to discuss them with. Really though I wouldn't panic about this at this stage of things. You'll be fine

[502Blues]

Yeah, ive been doing Hemo now,at the clinic for 10 yrs. Been on the transplant waiting list for most of that time. cam very close to getting a transplant in March 06. i was in the OR and prepped for surgery and everything,ready to go, but once the surgeon inspected the kidney he found that one of the veins was cut to short by whoever harvested it from the donors body,therefore it wasnt possible to use. Talk about heartbreak...