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Author Topic: DID MY DOCTOR MESS UP or is this normal?  (Read 2812 times)
KidneySinger
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« on: July 31, 2012, 07:55:02 PM »
I have a failed fistula but let me tell you the story....
I go to Mayo, thinking I have great docs and they will do everything right.
My GFR is 18 and my Neph wanted me to get a fistula to prepare and have it ready for the future.
I did all the pre op, mapping and so forth and they were putting it in my upper arm.
I went in for the surgery and all seemed to go well.
I never saw my doctor after the surgery and they sent me home after several hours of recovery.
After a couple of days, I read that I should feel a buzz....and I didn't.  I called the doctors office and they told me not to worry, it takes weeks before you feel it.
My post-op appointment was 2 weeks after the surgery.  I went in and sure enough, nothing.
They sent me for a sonogram and verified a blockage.
They then scheduled a 2nd surgery to try and unblock with a cathetar - it was scheduled for a week later.
I got a call that they had to re-schedule and now it was 2 weeks later...a total of one month had passed.
I went in and got all pre-opted with IV and ready to go...the doctor (different doc) came in and looked concerned and told me he was going to call my other doctors because he didn't want to do the procedure.  He said it had been to long and it wouldn't work.  They sent me home.
I now have a failed place in my arm that can no longer be used.
I went in today, 2 months after my surgery and saw my doctor for the first time...he wants to do a graph in the forarm.
Maybe these things happen but it does not seem normal to me.
I know fistulas fail, but it seems they should have tried something earlier...this was major surgery for me and I ahve a 6 inch Z in my arm, all for nothing, and can never be used again.  And to make matters worse, my hand is STILL swollen.  I can't wear a watch, a ring and can't put on a extra large gardening glove...2 month later.
What do you think?
Thanks!
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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.....
okarol
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« Reply #1 on: July 31, 2012, 08:21:42 PM »
Edited: Duplicate topic - go to http://ihatedialysis.com/forum/index.php?topic=27185.0

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okarol/admin
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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