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Author Topic: New AV Fistula  (Read 10911 times)
Clara
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« on: November 12, 2012, 08:36:44 PM »

Well I am on my way to a hopefully working fistula.  I only had one "may be" vein.  It is the Baccillius (sp?).  It is too deep and runs under my arm so the vascular surgeon decided we should do surgery to connect the vein and artery.  If the vein holds up and grows, then he will transpose it over my bicep.  This will mean an incision from under my arm to my elbow.

The vein was even smaller than he expected when he got in there.  The surgery went well.  Within 12 hours after surgery, my arm started turning red, swelling, and I was running a fever.  The surgeon said it was cellulitis, so antibiotics fixed me up.  I followed up one week post surgery and my cool arm was making the necessary noises and thrill...yipeee.  Surgeon said he didn't expect it to be still working.  I love beating the odds for now.

I am now exercising it in hopes that it will grow by next appointment the first of December.  The incision is healing nicely now.  It is my dominant arm, so once the pain diminished, it was back to work.

It was a pain trying to put my hair into a ponytail.  You don't realize how many things you do where you need two arms until one of them is hurt.

I hope everyone else is doing well.  Time for some rest.  I am trying to work lots of overtime since I missed a week.

Take care.

Christi
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MooseMom
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« Reply #1 on: November 12, 2012, 08:44:13 PM »

I am a real fan of "beating the odds" stories!  I hope things continue to go well for you and that your new fistula will continue to grow and mature.
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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."
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« Reply #2 on: November 13, 2012, 07:40:11 AM »

I love your spirit, Christi!  All the best to you.
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M3Riddler
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« Reply #3 on: November 13, 2012, 02:29:55 PM »

Well I am on my way to a hopefully working fistula.  I only had one "may be" vein.  It is the Baccillius (sp?).  It is too deep and runs under my arm so the vascular surgeon decided we should do surgery to connect the vein and artery.  If the vein holds up and grows, then he will transpose it over my bicep.  This will mean an incision from under my arm to my elbow.

The vein was even smaller than he expected when he got in there.  The surgery went well.  Within 12 hours after surgery, my arm started turning red, swelling, and I was running a fever.  The surgeon said it was cellulitis, so antibiotics fixed me up.  I followed up one week post surgery and my cool arm was making the necessary noises and thrill...yipeee.  Surgeon said he didn't expect it to be still working.  I love beating the odds for now.

I am now exercising it in hopes that it will grow by next appointment the first of December.  The incision is healing nicely now.  It is my dominant arm, so once the pain diminished, it was back to work.

It was a pain trying to put my hair into a ponytail.  You don't realize how many things you do where you need two arms until one of them is hurt.

I hope everyone else is doing well.  Time for some rest.  I am trying to work lots of overtime since I missed a week.

Take care.

Christi

Christi,

Do you the size of the veins you used?  You stated that the surgeon said you had small veins.... Many surgeons will not or are very hisitant to use smaller veins because it is a toupher surgery for them. An experienced surgeon will work on veins as small as 2 millimeters.  Many surgeons I have found have their own comfort level on what size to use.  I have very small veins. I went to 3 different surgeons and received 3 totally different answers on what would be done.  One of the vascular surgoens said he will not create a fistula wiht anything under 4 millimeters and would automatically put a synthetic graft in.  Well, to say the least, he did not do any surgery on me.

Let us know how everything goes. Did they tell you how long it will take to mature? Usually it is 2-5 months.

///M3R
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« Reply #4 on: November 18, 2012, 01:13:24 AM »

Excellent news Christi.  Look after it, be careful not to carry bags on that arm, don't sleep on it, keep listening for the bruit and keep an eye on it for any changes.  :beer1;
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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.
AnnieB
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« Reply #5 on: November 19, 2012, 11:20:52 AM »

 :flower; Good for you that everything is looking so positive!
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Clara
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« Reply #6 on: November 23, 2012, 05:28:27 PM »

Thanks eveyrone.  I love my "Thrill".  I have made just about everybody I know feel it.  I am careful not to sleep on the arm.  This is pretty significant because I love to sleep on my sides.  I just put a pillow on that side to remind me not to roll onto it.  I don't know what the size of the vein was or the surgeon thought it was after the initial mapping.  He said it was smaller than he expected when he did the surgery. 

It is still going strong and has already grown.  I am not sure how long it will take to mature because we still have to transpose the vein.  This will be another surgery. 

The good news is my eGFR went from a 16 up to a 26.  It will keep me off the transplant list, but I am feeling much better.  My stomach is not hurting me all the time.  I do still have the craziest dreams though.  I had a pet alligator last night. hahaha.  I am also having more low blood sugars.  My Endocrinologist reduced my basal rate but still dropping more often than I like.

For all of my compadres in the U.S., I hope you had an awesome Thanksgiving.  I feasted on salad but cheated with a small portion of some of my favorites.

I made a no bake cheese cake with cream cheese so that I could have dessert :)

Take Care and God Bless

Christi
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Clara
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« Reply #7 on: December 04, 2012, 08:18:23 PM »

I have a new update on the really small vein which grew into a large one....YEAH.  The vascular surgeon said that we can go forward with the next surgery on the 20th.  He said had I been closer to Dialysis he would not have done the AV fistula because the vein was so small.  However, since we had time to let it grow to see if it would mature...it did.  There is a narrow portion at the cite of the connection that he will get rid of and connect higher up on the vein.

I feel super lucky that I read posts from this cite and decided to hit this straight on and early.  Who knows what the future holds, but I want to do my best to be ready for it.

Christi
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natnnnat
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« Reply #8 on: December 05, 2012, 02:21:25 PM »

Love your work Clara!
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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.
Clara
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« Reply #9 on: December 26, 2012, 08:27:29 PM »

Well I had the second surgery.  The goal was to transpose the vein from under the arm to across the bicep.  In addition to this, the surgeon needed to disconnect the Artery and Vein and reconnect at a higher level of the vein due to narrowing at the original connection cite.

This has by far been the hardest thing I have had to do up to this point in my life.  There were complications with the vein twisting.  The surgeon tried to rethread the vein twice but it twisted each time.  He then cut further up on the arm to find out why it was twisting.  The vein had tore, so he put a graph in to reinforce it and tried a third time.  This time it worked.  Surger was four hours instead of one.

Recovery was not easy.  As soon as I came to, I began vomiting.  I continued for the next six hours even with meds to stop it.  I finally stopped and was allowed to be discharged from the hospital late in the evening.

I will try and post a picture.  It is Frankenstein looking, but I am sure it will look better with some time and healing.

I don't want to scare anyone but it helped me to see what I was facing to make an informed decision.

Take care everyone.
Christi
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Clara
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« Reply #10 on: January 04, 2013, 07:12:02 PM »

Almost back to normal :)  or what is normal for me...lol.

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MooseMom
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« Reply #11 on: January 04, 2013, 10:04:54 PM »

Oh my goodness, that's a very impressive scar you've got there!  It's healing really nicely, though!  I'm really sorry that the second surgery was so difficult.

Do you have an updated egfr?
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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."
Clara
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« Reply #12 on: January 09, 2013, 07:51:23 PM »

I don't have an updated eGFR yet.  I see the Nephrologist in a little less than two weeks.  My appetite is slowly returning so I think if it dropped, it is improving as I heal.

Great news from the surgeon this week.  He said I have a beautiful AV Fistula.  It is ready to go at any time I need it.  Excellent blood flow through the little vein that could.  I am so proud of my vein.  :)  He told me about 20% chance of success.  I like to beat the odds.  I am still not listed for a transplant yet, but will keep eating salads and moving forward.

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Lexxtech18
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« Reply #13 on: January 09, 2013, 07:54:43 PM »

Wow! Looks great!! So did they connect the basilic vein and brachial artery? I hope everything works out for you!! Way to beat the odds!  :2thumbsup;
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
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Clara
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« Reply #14 on: March 22, 2013, 09:47:58 PM »

Good news on my eGFR.  It is stable at 24.  Isn't that odd.  In November before the first surgery I improved.   Now I am holding steady.  Of course my diet is almost completely vegetarian.  I just don't seem to what meat or very rarely want meat.  The arm is really strong now.  I still have some numbness and a little swelling, but I am not sure if that will ever disappear.  The sliced it up good so I imagine those nerves are toast.  No worries though.  I am working like a horse and enjoying life.  :)

Thanks everyone.
God Bless.
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Clara
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« Reply #15 on: March 22, 2013, 09:50:06 PM »

Lexxtech18....yes they did connect the basilic vein and brachial artery.  That was my only sort of good one. :)
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« Reply #16 on: March 22, 2013, 10:51:16 PM »

Its quite amazing to see the difference between the Dec 26 and Jan 4 photos.  I am amazed at how the body can heal.  Thanks for posting these photos as they will be very helpful to others I suspect.  Great to hear about your stable eGFR.  There is another IHDer who posts sometimes, Kristina, who is very careful with her diet and eats mainly vegetarian, I think, though at other times she describes her diet as 'following what the elderly eat as their systems are delicate' or 'bland'.  Anyway she has maintained an eGFR at 10 for a long time (years?), which she ascribes to her diet. 
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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.
natnnnat
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« Reply #17 on: March 22, 2013, 10:54:17 PM »

Mind you when Gregory was pre-dialysis last year, his neph told him not to give up meat as he didn't want him to get too low on meat related nutrients, might have been iron or protein?   Sorry about being contradictory here.
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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.
Clara
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« Reply #18 on: June 13, 2013, 08:18:56 PM »

My endo won't let me give up too much meat.  I am not a big fan of beans or tofu.  The protein helps maintain my sugar levels but I find myself just not feeling up to meat most days.  My labs this week showed a dramatic decrease in the eGFR.  I also had to have a stint placed in my fistula as scar tissue started blocking the flow.  The vascular surgeon said it would eventually clot off.  That procedure went very well with no problems.  I hope to not need it but I am not holding my breath.  I am so glad the pictures help.  Here is an updated one.  The two marks toward the top are where the surgeon went in to place the stint.
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MaryJoe
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« Reply #19 on: June 14, 2013, 03:33:41 AM »

The incision looks so much better!    :2thumbsup;   Glad your stent surgery went well. I hope you can avoid using your fistula for a long time. We need a smiley with his fingers crossed, so until that happens: X!)
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renalwife
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« Reply #20 on: June 14, 2013, 03:56:04 PM »

Glad everything ? is going well for you.  You have a very postitve atitude and sometimes I fine that is difficult to sustain.  Thank you for posting the pictures.  Your description of your vein and the surgery was very interesting.  Hope you will not need it for a very long time.
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Clara
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« Reply #21 on: February 12, 2014, 09:32:22 PM »

My fistula is still going.  I have had to have an angiogram to balloon it but all went well.  The Lord is truly blessing me as my eGFR has improved and now is holding steady at about a 27.  This is truly amazing to me thinking back to when I was at 18 and planning the fistula surgery.  I have only God to thank for this and have found myself studying his word and becoming  closer to God daily.  I have gone over 6 months with decent health.  Of course just a few days ago, I caught some kind of cold.  It has gone into Bronchitus and is keeping me down.  I just wanted to give an update.

Lots of love and prayers to all.
Christi.
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Jean
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« Reply #22 on: February 13, 2014, 01:47:08 AM »

Christie, have you started D yet? I notice you have a line just below the inside of your elbow. Is that a part of the fistula? Thanks for any answers you can give me.
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ReyPKD
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« Reply #23 on: February 13, 2014, 08:57:29 PM »

Hi, my name is Rey. I am new in the site. I have PKD....GFR 30 percent still, but I was 40 percent last year.
Today I was at the HD clinic and I saw lots of people with their fistulas.....I'm scared.
I'm 39 years old, male....I have my family support, Wife and two little girls.
I guess I'm not at HD yet , but scares me the future.
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Clara
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« Reply #24 on: February 15, 2014, 08:59:01 PM »

Hi Jean,

Yes the scar along the fold of my elbow is part of the fistula.  The chances were so slim that the Vascular Surgeon did the surgery in two parts.  The first surgery was to connect the artery and vein at the elbow junction.  The surgeon wanted to see if the vein would actually grow and hold up.  It did, so the second surgery was done to transpose the Basilic vein from under the arm to up top for easy access.  This involved cutting the entire length of the under arm and re-opening the original incision at the vein/artery junction.

Rey,
It is very scary what we are going through.  However, don't let it define you.  I expected to be on Dialysis by now, but am very fortunate that I have improved.  I don't know for how long but I am going to enjoy it as long as it lasts :)  I found research and knowing more about what I was facing helped me. 

I hope I answered all points.  Take care and feel free to ask more questions.

 :flower;
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