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paddbear0000
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« on: January 24, 2009, 02:45:45 PM »

I have crappy veins! Yay!  :sarcasm;  I had my consultation with the vascular surgeon this morning for my fistula. It turns out my veins are very tiny and most are rather deep. He said I have two options for a natural fistula. One, is to have it done on my right wrist. Well, I'm right handed. So my other option is to have it on the inside of my left elbow. But then I'll need a second surgery to bring the access closer to the surface. The first option would not require a second surgery. I chose the second option. Now I just have to wait for the access scheduling nurse to call me so I can set up the surgery....

...However, the last time I saw my neph, he said we set up the vein mapping (check) and a surgery consult (check), then see what my bloodwork shows (had it drawn yesterday, I''l get results Monday). He said if my creatinine is climbing, then I can get the surgery. Uh, no! I decide when I get he surgery! I want it done now!!! Every doctor I have had has either never even mentioned getting it done, or have told me it's too soon. My function has been fluctuating between 14 and 18% So when exactly, do they think is the right time?! When I'm being rushed to the ER because I need dialysis?! The surgeon said that it's going to take a lot of work to get my fistula in usable shape due to the size of my veins. He also said I have a good chance it won't work and he'll need to do it in my other arm. I don't care what the neph says, I'm having teh surgery. I need teh best chance and head start I can get!

One plus to the surgery is, I'll get to participate in a study. They will be testing to see if vein thickening plays a part in why some fistulas just never work. So that's kinda cool.
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kellyt
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« Reply #1 on: January 24, 2009, 02:57:23 PM »

My 2nd fistula was placed in my upper left arm, as well.  He repositioned the vein closer to the surface at the time of the fistula surgery.  So only one surgery.  However, the incision/scar goes across the inside of my elbow and up my inner arm up to my armpit.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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« Reply #2 on: January 24, 2009, 03:06:06 PM »

You are absolutely correct, Paddbear!  It seems a great many nephrologists think that waiting until dialysis is emergent and then inserting a catheter is the way to go.

However, if you can get the fistula surgery now, before you need dialysis, you have a much better chance of getting it in working condition and avoiding a catheter.

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G-Ma
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« Reply #3 on: January 24, 2009, 03:13:08 PM »

Your second option is the one I had done and it's working like a charm...my veins are tiny as well and he was able to build a huge one.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
paddbear0000
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« Reply #4 on: January 24, 2009, 03:21:00 PM »

My incisions will be a lot smaller, probably since he won't have to make a continuous cut from one area to the other. I guess?   :waiting;
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TynyWonder
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« Reply #5 on: January 24, 2009, 03:45:22 PM »

One plus to the surgery is, I'll get to participate in a study. They will be testing to see if vein thickening plays a part in why some fistulas just never work. So that's kinda cool.

I wanted to comment on the study you are going to be participating in...........I had 4 access surgeries before they finally got one to work.  I had 2 fistulas and 1 other graft and finally this last graft surgery (my 4th surgery) has been working and the reason for that is, that my blood WAS clotting.  I was FINALLY sent to a hematologist, he ran 7 different types of blood tests and he DID determine that my blood is too thick and that is why the access were clotting; therefore, I am now on 2 different blood thinners and so far, so good, this last graft has been working great!    Oh, I also noticed you said "fistulas" but again, that is why neither one of my fistulas worked either..................blood was too thick and clotting...........

I too, am told I have "too" tiny veins when I go to have another surgery, when they draw blood, or sometimes they tell me at every treatment!   :)  Basically, I am told that all the time but it will all work out for you!   ;)
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
paddbear0000
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« Reply #6 on: January 24, 2009, 04:13:34 PM »

Actually, the study is not whether the blood is thick, but rather the vein's walls themselves. When they take out the 2-3 mm sliver of vein wall to attach the artery (or vice versa, can't remember), they will keep it instead of tossing it like normal. They will then cut the sliver in half. With one half, they will determine if there is thickening of the wall, and with the other half, they will be testing for oxidants. Oh yeah, that was the other part of the study. They will also be testing to see whether oxidants in the vein walls play a role in fistulas not working. I even got to meet the doctor who was doing the research study. I thought it was pretty interesting.
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
kellyt
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« Reply #7 on: January 24, 2009, 04:46:04 PM »

My incisions will be a lot smaller, probably since he won't have to make a continuous cut from one area to the other. I guess?   :waiting;

I have no idea, but I hope you're right!  This is the ugliest scar!     :cuddle;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Pam
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« Reply #8 on: January 24, 2009, 06:24:39 PM »

Hi Paddbear.......My veins were too small also. My fistula was placed Dec 16. right at the bend of my elbow. I have a scar about 2/12 in and it looks more lke a very fant scraatch. Some time in Feb I will be having the surgery to have it moved. Dr. says I will have  3 small incisions. First surgery was outpatient but I was told this one would be over night. Something about drainage, I'll find out all the details Feb 11. Hope yours goes smoothly.
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« Reply #9 on: January 24, 2009, 07:09:55 PM »

Sorry about the tiny veins and your options.  However, I suggest you get a 2nd opinion from another vascular surgeon.  Did they mention making a natural graft?  Grabbing a large vein from your right arm and tying it into your left arm?  They might not have to do a second surgery to bring your veins to the surface.  Just a thought!
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« Reply #10 on: January 25, 2009, 02:46:08 AM »

Seems doc forgot third option which is a graft. My veins aree bad to, that's why my fistula quit working. Then they did a graft and it is still going after all these years of non-use. Yeah I would stay away from your right arm, that's important. As far as placement in the inner elbow, that may make dialysis a little uncomfort able. You would really not want to bend your arm and that can be dificult to due unless the arm is strapped down to some sort of support.

If in doubt, always get a second opinion, You have time so you can be smart about doing things.

If I can gget a good picture taken, I'll show you my graft. It starts at the inner elbow, goes up my bicep, and back under my arm (which makes putting  deoderant on feel odd).
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
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Eye Surgery - Nov 2012
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MandaMe1986
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« Reply #11 on: January 25, 2009, 10:31:43 AM »

I am the same way. And to top it off the vains I did have are already used up.  I have had more lines put in me in the last year and a half I got nothing left.  That kinda sucks cause I haven't even started dialysis yet.  I did have a dialysis line in my vina cava for about 6 months trying to hold it open (had a mishap when trying to place a port in for my chemo)  So yeah I feel ya there.  IT SUCKS! I'm sorry.

I do agree with Crish though, a secound opinion might help.  If nothing else maybe someone else might have another idea that might be slightly better.  You never know.  Good luck!  O0
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« Reply #12 on: January 25, 2009, 02:43:17 PM »

Crappy veins!!!!!!   :stressed;

Les's aren't what you would call prime
specimens either.

He had two previous fistula attempts, neither
worked at all  We finally went to Phila to the
Dr recommended to us by the Nurse Prac. at his
unit for those who are having a problem getting
their fistula to work and thank  God no problems
It was a big cut, tho  Poor Big Guy had the under
arm thing, also

Wish you luck, P.Bear

Anne
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Lucinda
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« Reply #13 on: January 25, 2009, 05:25:56 PM »

A lot of us have crappy veins.  My veins were too small for a fistula so I have a graft but I had three before the last one was successful.  I haven't even started dialysis yet but the last one has been in now for 18 months and is going strong.  Unfortunately it is one of the trials but I totally agree that you get it in sooner than later.
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paul.karen
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« Reply #14 on: January 26, 2009, 12:42:34 PM »

All new to me like it is to you paddbear.

But i dont think you can get it done to soon.  That just goes against the whole let it mature aspect..
Best of luck to you.
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paddbear0000
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« Reply #15 on: January 26, 2009, 01:06:58 PM »

Well, so much for getting it done too soon. Now it's late. My neph called me today with my lab results. My function dropped from 17% a month ago, to 9% on Friday when I had my blood work drawn. I have a feeling it's gotten worse since Friday though. Yesterday I started feeling more nauseous, then started throwing up after I ate something. I don't even want to look at food now, I can't keep any food down, any standing or walking makes me short of breath and have chest pains. I feel like crap!!!! I just want to sleep. My doc wanted me to start seeing a neph here in town so I could do dialysis here instead of driving an hour down to Cincinnati for every treatment. They faxed him the results, but now I'm waiting to here from the local doctor once he gets in. So much for trying to avoid a catheter.   :(   
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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www.facebook.com/profile.php?id=1659267443&ref=nf 
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
kellyt
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« Reply #16 on: January 26, 2009, 02:18:05 PM »

I'm so sorry, Padd.  You still need to get the fistula if that's the way you want to go.  Then after it matures and they use it a few times they can remove the catheter.  That's what they did with my friend.  I hope you are doing okay.  I'm thinking about you.  :cuddle;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
G-Ma
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« Reply #17 on: January 26, 2009, 02:58:43 PM »

Praying for you..lots of prayers...and hugs...and yes you still need to get it done if you are doing hemo as they won't let you keep the catheter very long.   


 :grouphug;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
thegrammalady
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« Reply #18 on: January 26, 2009, 03:12:24 PM »

sounds like you need to start sooner rather than later. a cathater isn't really all that bad. i had 3 by the time i finally got a working fistula. the worst part was listening to my doctor obsess over my having one in the first place.
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« Reply #19 on: January 26, 2009, 03:24:24 PM »

Paddbear, I'm so sorry to hear that things are happening more quickly than you expected.   :cuddle;

Catheters aren't that bad.  My uncle who is on dialysis has had several off and on during periods when his fistula wasn't functioning properly.

The main thing is to be very careful as catheters are a big source of infection.  Make sure you and everyone who touches it knows what they are doing.
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« Reply #20 on: January 26, 2009, 03:33:40 PM »

Trying to avoid having the catheter was the right thing to do Paddbear, in my opinion, but it's also not the end of the world that you need a catheter.  The main thing is to also have the fistula surgery done as soon as you can so you can give it several months to mature and then get rid of the catheter. 

As others have said, be sure that proper sterile techniques are used, wear a mask yourself when they're putting you on, and avoid showers no matter how tempted you get.  You could look into a Korshield to protect it but personally, I just took baths. 

I had my fistula done in what we thought would be enough time but I still had to get a catheter and start D before it was mature and many of us have been in that exact situation.

I'm really sorry about how fast this has devolved for you and I'm hoping that you will start to feel better once you start D and begin ridding your body of the accumulating toxins.  Try not to stress too much even though that's of course entirely natural, you tried you best to be proactive and now you must do the same going forward.   :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
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« Reply #21 on: January 26, 2009, 07:54:27 PM »

Sorry to hear paddbear about this news. I still suggest a second opinion  ASAP though from one who is not affiliated with your doctor. Maybe someone at the transplant clinic can suggest one of their own to see what they think can be done. If it is the same, just get it closer to home if you trust the doctor.

There is one good thing to come of this, the transplant list, Now they can't give you the "It's to early" spiel now.

Agains, sorry to hear paddbear.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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« Reply #22 on: January 27, 2009, 05:21:50 PM »

Don't worry, I still plan on getting the fistula. I ended up in the hospital last night. Here's the post--http://ihatedialysis.com/forum/index.php?topic=12156.0. Since it was just some stomach bug, I obviously didn't get a catheter put in. My creat and gone up from 5.5 (on friday's labs) to 5.65 last night, but after getting the fluids, it went down to 5.3. My neph up here in Dayton wants to see me immediately, so I have an appointment tomorrow. That should be interesting since we are in the middle of a snow storm and the cities around here are cutting way back on salting because of a shortage! Anyway, the neph wanted me to go get more labs drawn today, but there is no way I was driving back out in that. I told the office they could call the hospital ang get the labs they did. I never heard back, so they must have gotten them. So until tomorrow, I still don't really know what is going to happen.
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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