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Fatkidney
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« on: July 25, 2012, 08:19:36 PM »

I had my AV fistula surgery yesterday.  It looks like it was cut into with a butter knife.  I hope my doc wasn't drinking.  JK! 
Anyway, he didn't say anything about being able to hear anything from it, nor did my neph. The only reason I know you're supposed to is because of hearing it from other patients.  It's pretty sore, and there's a section of my thumb that is numbish, but I feel like it's doing pretty well. At this point, about 36 hours in, should I be seeing or hearing anything from it? I see my neph on the 31st and my surgeon on Aug. 13. 
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June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
MooseMom
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« Reply #1 on: July 25, 2012, 08:25:39 PM »

I don't recall hearing anything quite so soon as 36 hrs post surgery.  Let us know what your neph says, OK?  Just a few days away.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Sue
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« Reply #2 on: July 25, 2012, 11:09:49 PM »

I had my fistula op last April, I still have a little numbness on the back of my hand. I could feel the 'thrill' pretty much from day 2.
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« Reply #3 on: July 26, 2012, 01:17:28 PM »

I had my AV fistula surgery yesterday.  It looks like it was cut into with a butter knife.  I hope my doc wasn't drinking.  JK! 
Anyway, he didn't say anything about being able to hear anything from it, nor did my neph. The only reason I know you're supposed to is because of hearing it from other patients.  It's pretty sore, and there's a section of my thumb that is numbish, but I feel like it's doing pretty well. At this point, about 36 hours in, should I be seeing or hearing anything from it? I see my neph on the 31st and my surgeon on Aug. 13.

Fatkidney,

You should be able to feel and here the bruit/thrill immediately.  They should have given you a stress ball to exercise the fistula and stethescope so you can listen to it daily for changes in sound.   I would call your doc/nurse asap and let them know if you do not feel anything. I would also request a stethescope if they did not provide one. 

Please view this website as it is loaded with information from monitoring to care of the fistula. The website is called

http://fistulafirst.org/HealthcareProfessionals/WheredoIstartifIamadialysiscenter/CannulationoftheAVFistula.aspx

It is important not to wait around if you are having issues as the longer you wait, the more issues you can have.
///M3Riddler
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Fatkidney
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« Reply #4 on: July 26, 2012, 06:24:42 PM »

Thank you for the information.  I will check it out.  I still don't hear anything but I do feel soreness all the way up my arm.  The incision is in my wrist.
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June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
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« Reply #5 on: July 26, 2012, 08:13:13 PM »

Fistula's don't come with a guarantee, and most vascular surgeons I know can make a nice living just fixing the ones that clot off.  I have one suggestion to help keep it working.  After dialysis needles are out, allow enough time to make sure the clots have formed.  Don't let the staff put the tape all the way around the arm. To me it seems too much like a tourniquet, 3/4 of the way around is sufficient.  Good luck to you and your new fistula.  They can last for years if properly cared for.
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From the birthplace of dialysis Seattle Washington.  University of Washington where Belding Scribner invented the "Scribner Shunt" which enabled acute dialysis over 50 years ago.
Fatkidney
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« Reply #6 on: July 30, 2012, 08:05:39 PM »

I'm a little bummed about my fistula. I had to call the surgeon yesterday because the incision was looking pretty red and inflamed.  He called me in an antibiotic and wanted to see me today to check it. I also saw my neph today. Neither the docs or a nurse could hear anything in it.  The surgeon told me to use my squeezy ball as often as possible and it will hopefully be audible soon.  From reading on here I know these procedures don't always work.  I wonder what the odds are of this one working? My vein was pretty small.  I'm not a fan of the pain.  I was really hoping the first try would get it. 

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June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
KidneySinger
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« Reply #7 on: July 31, 2012, 07:53:19 PM »

Make sure you demand to have it checked.  I didn't and paid the price.  They didn't see me for 2 weeks and when I went in, it was not working.  They then waited another 2 weeks before trying to fix it, at which point, it was to late and the fistula fixer doctor refused to do the procedure because he said after a month, it would not work.
Mine looks like a huge Z for Zorro.  I have mine around the turn in my arm at my elbow.  It is forever gone since it has failed.  I will have to get a graph but I am still at 18 GFR so I have some time.
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3rd generation of Alports Syndrome: 1st generation: 4 uncles died in 20's - next generation: 2 uncles transplanted at 40, 1 died from cancer as result of rejection medication, other still alive at 65 with 20+ year transplant from sister (a carrier of Alports) but mulitple cancer surgeries through the years...looks like he is 85 years old.
1961: Blood and Protien in urine since birth
Doctors telling me kidneys would fail - every year for 50 years now! No hearing loss, just ringing
(Really think ace inhibitors and beta blockers since high school helped my surprising longevity - if you are NOT on an ace inhibitor, please ask your doctor why)
2012: GFR: 18 at present - on transplant list but they are going to have to convice me after seeing my uncles.
Preparing for dialysis
Younger brother on dialysis now for 2 years
Fistula Surgery at Mayo Clinic: failed
Going in for 2nd attempt at a fistula with different doctor - different vein
9/7/12 2nd attempt at fistula - WORKING! Mayo ruined 2 veins and St Vincents got one working!
Need additional surgery when fistual matures to bring closer to the skin.
GFR 17 - so plenty of time
WOW...just when I thought I had plenty of time - my GFR dropped to 13 in a month - guess I better get that fistula moved forward.
Moved it forward and have a thriving...thrilling fistual...BUT
Just when I did all that, I decided to go the PD route...so glad I did.
Now do PD every night and all seems to be going very well...for about a year.
Now on hemo dialysis at Mayo Clinic Jacksonville
Every Mon Wed and Friday for 4 hours at 400 pump speed.
Its really not that bad.....
Fatkidney
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« Reply #8 on: September 05, 2012, 02:02:12 PM »

So the final determination was made today by the vascular surgeon that my wrist fistula isn't going to mature.  It was just too small.  It's was around 2.2 mm before the surgery.  SO I'm going in Friday to have my second fistula placed at my elbow.  Hopefully this one matures.  The vein is more than 4 mm in some places, so that's a much better start. 
Logged

June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
Fatkidney
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« Reply #9 on: September 11, 2012, 09:14:41 AM »

It appears surgery and scar #2 did the trick.  I've found my thrill.  It's thrilling!  But gee whiz does it hurt...and it's ugly.  Oh well, no chest cath for me.  Yay!
Logged

June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
KidneySinger
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« Reply #10 on: September 12, 2012, 02:11:31 PM »

Great to hear!  Yes you should feel it.  I just had my second attempt and this time it worked as well.  I can hear it just by putting my ear to my arm.  I used a differend doctor and hospital.  It will still need to be moved as it is very deep right now - but at least I have something going!
Logged

3rd generation of Alports Syndrome: 1st generation: 4 uncles died in 20's - next generation: 2 uncles transplanted at 40, 1 died from cancer as result of rejection medication, other still alive at 65 with 20+ year transplant from sister (a carrier of Alports) but mulitple cancer surgeries through the years...looks like he is 85 years old.
1961: Blood and Protien in urine since birth
Doctors telling me kidneys would fail - every year for 50 years now! No hearing loss, just ringing
(Really think ace inhibitors and beta blockers since high school helped my surprising longevity - if you are NOT on an ace inhibitor, please ask your doctor why)
2012: GFR: 18 at present - on transplant list but they are going to have to convice me after seeing my uncles.
Preparing for dialysis
Younger brother on dialysis now for 2 years
Fistula Surgery at Mayo Clinic: failed
Going in for 2nd attempt at a fistula with different doctor - different vein
9/7/12 2nd attempt at fistula - WORKING! Mayo ruined 2 veins and St Vincents got one working!
Need additional surgery when fistual matures to bring closer to the skin.
GFR 17 - so plenty of time
WOW...just when I thought I had plenty of time - my GFR dropped to 13 in a month - guess I better get that fistula moved forward.
Moved it forward and have a thriving...thrilling fistual...BUT
Just when I did all that, I decided to go the PD route...so glad I did.
Now do PD every night and all seems to be going very well...for about a year.
Now on hemo dialysis at Mayo Clinic Jacksonville
Every Mon Wed and Friday for 4 hours at 400 pump speed.
Its really not that bad.....
MightyMike
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« Reply #11 on: September 19, 2012, 08:24:42 PM »

I could feel and hear mine when I woke up from surgery and your right it was sore.  Just remember to use a stress ball and exercise it so it matures fast.  Good luck.
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"The greatest pleasure in life is doing what people say you cannot do."
   -Walter Bagehot
==========================
December 2003 diagnosed with IgA Nephropathy 80% Function.
October 2004 started In-Center Hemo Dialysis Perma-Cath 5% Function.
September 2005 Living Related Donor (Mother) Transplant.
March 2009 Diagnosed CKD and IgA Nephropathy.
August 2009 Upper Left Arm Fistula.
November 2009 started In-Center Hemo Dialysis.
December 2010 started Home Hemo Dialysis.
January 2012 went back to In-Center Hemo Dialysis.
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« Reply #12 on: September 20, 2012, 04:08:06 AM »

Glad to hear this second attempt sounds like its working.   :beer1;  Hope the pain subsides soon.  Take good care of it!!!!!

Here's some info I found in brochures from renal hospitals, when gregory had a new fistula last month.


Look. . . .
  • You will have a small scar (usually in your wrist or elbow area) with stitches that will need to be removed in about 10 days. Please make a follow-up appointment
    to have this done.
  • A small amount of bleeding from your incision for a day or two is normal. If it continues for longer, or is so much that a large bandage will not absorb it, you
    should call your surgeon.

Feel. . . . .
  • Over the next few days you may have a small amount of pain and swelling in the area of your fistula. It should go away within a few days. A pain pill will usually be prescribed for this discomfort.
  • Check your fistula for a “THRILL,” four times each day. No, not because it’s thrilling to check your arm! A “THRILL” is a buzzing sensation felt over your
    fistula. It indicates that there is good blood flow through your access. Have your nurse show you how to do this before you go home.
  • For arm swelling Elevate your access arm on two pillows so that your arm is at, or above, the level of your shoulder.

Your goal is to avoid activities that might decrease the blood flow through
or damage your new fistula. So. . . .
  • No tight clothing on your access arm
  • Don’t wear your watch or carry your purse on your access arm
  • Don’t allow anyone to take a blood pressure or put IV’s on your access side
  • No blood draws on your access arm (unless it’s done by dialysis people)
  • Don’t lift heavy objects like grocery bags or sleep on your access arm
  • Keep it clean; scratching it is off-limits
  • If you have bleeding from your access after dialysis or from an accidental cut, put pressure directly over the cut and go to the emergency room

More Precautions
  • Avoid low blood pressures during dialysis
  • Call the doctor if you notice redness, swelling, drainage or numbness in the area of your stitches, if your access feels warm to the touch or you have a temperature over 100º.
  • Call the doctor if the thrill changes or is missing
  • Call for increasing pain, coldness or a skin tone change on the access limb


Caring for Your Vascular Access: A Little Effort Can Make a Big Difference!
http://www.aakp.org/print-version/dsp_library_art.cfm?art=12
By Sanford D. Altman, MD & Rachael Plummer, RN, CNN
[...]
Once your access is in place, daily care is a must! Regardless of the type of access, take time to look at it daily. In addition to a visual inspection, grafts and fistulae should be felt daily. Typically, the earlier a problem is identified the easier it is to treat.

What to Look For in Graft or Fistula Inspection
Changes in appearance of the skin on top of your access, such as redness, localized swelling or pustules (pimples), may be a sign of infection. This should be reported to your caregiver as soon as possible as this may require antibiotic therapy, hospitalization or even a surgical procedure.

Localized bulging over areas of your access or extremity should be reported to your caregiver as soon as they are noted. This may indicate an aneurysm, which is a localized area of enlargement within a blood vessel or graft. If an aneurysm begins to rapidly enlarge or if the skin on top of the aneurysm develops a shinny appearance or discoloration, or if a scab forms over the aneurysm without known injury to that area, inform your caregiver immediately. These may be signs that the wall of the aneurysm is thinning, placing the aneurysm at a higher risk of rupturing. This could be a life threatening emergency!
Swelling of the access extremity (arm or leg), face or neck and/or the presence of multiple small, enlarged veins on the upper arm or chest may indicate a narrowing or blockage of the outflow veins preventing adequate drainage of blood from this region. If present, the sooner the narrowing or occlusion is treated (days vs. months), the greater your chance of success in reducing the amount of swelling.

If the lower part of your access extremity (hand or foot) becomes cool, numb, weak or painful, inform your caregiver. When an access is created, there is no way for the surgeon to know how much blood flow will be diverted from the lower part of your extremity to your graft or fistula. If the diversion of blood causes the symptoms described above, it is called a “steal” since blood that would normally go to the lower part of the extremity (hand or foot) is stolen by the access. In those who develop these symptoms, some will see improvement over time, while others will stabilize, only develop symptoms while on dialysis, or worsen. In severe cases, steal can result in permanent damage to the affected area. Regardless of how or when you develop symptoms, they should be reported to your doctor to be monitored. Additional medical procedures may be required to improve blood flow to the area in need while attempting to preserve the access. Occasionally, the access may need to be disconnected to restore flow to the affected area. The earlier you are treated, the better your chances are of resolving the problem.

Changes in the way your graft or fistula performs during dialysis may indicate problems developing within your access. Over time, narrowing often develops inside grafts and fistulae causing it to function poorly and eventually stop working. If this narrowing develops on the venous side of your access or in the veins removing blood from your access, it often results in increased pressure within your access. This increase may result in an increase in venous pressure noted in your access during dialysis, a decrease in blood flowing through your access (ml/minute), prolonged bleeding after removal of your dialysis needles, aneurysm formation and/or enlargement, and a reduction in how adequately you are dialyzed as measured on your monthly labs (URR, Kt/V). When narrowing occurs near the arterial connection of your access, there may be a reduction in pressure. This may result in collapsing or “sucking” of your access while on dialysis, difficulty placing needles in your access, a decrease in blood flowing through your access (ml/minute), and a reduction in dialysis adequacy. Any of these changes should be reported in hopes that significant narrowing can be dealt with in a timely manner keeping your access working for as long as possible.

  • Avoid using your access arm for blood draws.
  • Avoid activities that could block or slow the blood flow within your access, including monitoring blood pressure on the access extremity, carrying or resting heavy objects on your access extremity, sleeping on your access or access arm, sleeping with the access arm bent, placing excessive pressure on your access after needle removal following dialysis, and wearing tight fitting clothing.

In conclusion, your dialysis access is your lifeline. Take time to learn about it and care for it. A little effort can make a big difference.
Sanford D. Altman, MD, has specialized in access care for more than 12 years and is founder and medical director of Open Access Vascular Center in Miami.
Rachael Plummer, RN, CNN, has served as head nurse at Open Access Vascular Access Center since 1999. She has specialized in dialysis patient care for more than 15 years.
This article originally appeared in the January 2006 issue of aakpRENALIFE, Vol. 21, No. 4.

« Last Edit: September 20, 2012, 04:13:21 AM by natnnnat » Logged

Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
Whamo
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« Reply #13 on: September 24, 2012, 08:29:25 AM »

I have a big thrill in my new fistula (it's about 2 months old), and it works well, but I hate it.  I hate the needles.  I've decided to go to CAPD.   I hated my catheter too, but at least I'll be able to take showers with CAPD.  I'll miss the ocean and the pool, but it's better than becoming a pin cushion.
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bevvy5
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« Reply #14 on: September 24, 2012, 05:53:37 PM »

I have a big thrill in my new fistula (it's about 2 months old), and it works well, but I hate it.  I hate the needles.  I've decided to go to CAPD.   I hated my catheter too, but at least I'll be able to take showers with CAPD.  I'll miss the ocean and the pool, but it's better than becoming a pin cushion.

Maybe I'm missing something but you can definitely shower with a fistula.  The needles, unfortunately, come with that territory.

Hope CAPD works out for you if that's your choice. 
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Fatkidney
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« Reply #15 on: October 04, 2012, 08:45:07 PM »

I'm SO sad.  I noticed this morning that my pinkie and next finger on my left hand felt numb.  It's my fistula arm. Over the first hour at work they went from numb to having a slight pain.  I called the vascular surgeon's office.  He sent me for an ultrasound at the hospital. The guy who did the ultrasound was really nice and actually was more open about sharing information than most. He told me the fistula isn't working.  It was late in the day so he said the surgeon probably wouldn't call me 'til tomorrow morning and he'll let me know what's going on with my fingers.  I feel so defeated.  I so so so very badly don't want to have to have a chest catheter. I'm a very optimistic happy go lucky type of person but it's all starting to get to me.  I just can't believe it's not working.

When I was getting registered before the ultrasound the lady asked me if I thought they put the right thing on the paperwork.  It said "steale phenomenon." Can anyone shed some light on this?  Google didn't give me much.
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June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
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« Reply #16 on: October 04, 2012, 09:05:24 PM »

I'm SO sad.  I noticed this morning that my pinkie and next finger on my left hand felt numb.  It's my fistula arm. Over the first hour at work they went from numb to having a slight pain.  I called the vascular surgeon's office.  He sent me for an ultrasound at the hospital. The guy who did the ultrasound was really nice and actually was more open about sharing information than most. He told me the fistula isn't working.  It was late in the day so he said the surgeon probably wouldn't call me 'til tomorrow morning and he'll let me know what's going on with my fingers.  I feel so defeated.  I so so so very badly don't want to have to have a chest catheter. I'm a very optimistic happy go lucky type of person but it's all starting to get to me.  I just can't believe it's not working.

When I was getting registered before the ultrasound the lady asked me if I thought they put the right thing on the paperwork.  It said "steale phenomenon." Can anyone shed some light on this?  Google didn't give me much.

It's called vascular access steal syndrome.  It means that the blood flow to the hand is lessened because of high flow around the fistula/graft.  It can make your hand cold and numb, even more so while getting treatment.  You can read more here...

http://www.aakp.org/aakp-library/Access-Arm/index.cfm

http://forums.homedialysis.org/archive/index.php/t-2398.html
« Last Edit: October 04, 2012, 09:12:33 PM by PatDowns » Logged

Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013.  I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
cassandra
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« Reply #17 on: October 05, 2012, 02:04:44 AM »

How did you get on Fatkidney?

take care Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
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« Reply #18 on: October 05, 2012, 08:15:47 PM »

I spoke to my surgeon's nurse.  I'll see him on Wednesday. She used the term occluded.  She said he will go over options for either trying to fix this one or trying to make a new one, which would be my third.  It's just not getting blood flow.  I tend to carry my two year old around a lot and I had asked him if I could still do that. He said yes. That's the only thing I can think of that I've done that could be the problem other than things I might be doing when I'm sleeping.

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June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
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« Reply #19 on: October 05, 2012, 08:33:45 PM »

I'm so sorry Fatkidney that is awful. I haven't had one done yet but my Dr says its gonna be soon. That is my fear,  that they will do it and it wont work. I have never had any type of surgery in my life and it terrifies me to no end. I hope they can fix yours i know it must be frustrating. Best wishes and i will say a prayer for you.
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Fatkidney
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« Reply #20 on: October 10, 2012, 02:32:22 PM »

Thanks everybody for all your kind words and resources. 
I saw the vascular surgeon again today and he gave me two options for the next go round.  He doesn't want to fix my elbow fistula cause he thinks it'll just do the same thing in a few weeks.  SOOO he said I could either get a graft or he could go in and bring my basilic vein around to the front and make that connection.  Graft he says maybe wouldn't last as long in the long term and has greater chance of infection. Basilic he said would be three incisions and more pain.  Any opinions on which you would do?
« Last Edit: October 10, 2012, 02:43:00 PM by Fatkidney » Logged

June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
cassandra
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« Reply #21 on: October 11, 2012, 02:31:28 PM »

I think I would go for the basilic vein option. I don't think a graft is painless either, but I might be wrong on that.

good luck Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
sullidog
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« Reply #22 on: October 13, 2012, 08:29:33 PM »

I have a graft but if he can do another type of fistula I'd go for that since that is the gold standard and prefered access.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
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« Reply #23 on: November 18, 2012, 12:51:50 AM »

This business of your fistulae is a bit of a worry isn't it.  Any news?  Hope you are okay. 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
Fatkidney
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Gender: Female
Posts: 85


« Reply #24 on: November 18, 2012, 08:41:01 PM »

This business of your fistulae is a bit of a worry isn't it.  Any news?  Hope you are okay.

Thank you! Yes.  The second one didn't work either. I go in for a third on the 27th.  I got a second opinion this time because I thought well maybe this guy's just a hack (even though I really like him).  But apparently I just have bad luck. The second surgeon said there was nothing that could've been done.  So this time they will be slicing into the back of my arm, three incisions to reroute a big artery.  He said this one will hurt worse. Oh well, as long as it works. Hopefully 3rd time's a charm.
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June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
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