Unexpected Fistula Revision

[Black]

As some of you may know we went to the DCI clinic for NxStage orientation on Nov 6.  Everything went very well until the training nurse examined Mike's fistula.  She felt it gently with her finger tips for almost a minute, part of the time with a tourniquet.  She removed the tourniquet, said she was concerned, and went to get a stethoscope.  After a few minutes, with and without a tourniquet, she went to get another nurse, who also used the stethoscope and listened intently.   She told us that Mike's fistula was not useable due to collateral veins having formed off of the fistula vein, and that since the surgeon would have to go in to fix that, he should probably raise it closer to the surface since it was probably too deep.

She was quite shocked that it had not been so closely checked since the initial post-op visit (a week or so after surgery the surgeon applied a sticky waffle like patch over the incision site with instructions to let it just shred and fall off over the next two weeks).  He never saw the surgeon again.  Since then it had gotten just a cursory exam by the nephrologist a couple of times, and a close look by a dialysis nurse in GA, who said in her opinion it was useable.  It looked fine to us -- but what do we know?  It's visible for about 6 inches and hums well.  The NxStage training nurse and the other nurse said that if the surgeon didn't see anything wrong with it to get another surgeon.

We went back to the surgeon who did the original fistula surgery; he is in a large practice which is affiliated with a teaching hospital.  He said he didn't see anything wrong with the fistula and wanted to use DYE  and do a veinogram to check it out!   Mike has very little kidney function left - GFR10, so I told him, "No dye."  He was NOT happy at being opposed but finally conceded that dye could wipe out the rest of his kidney function and make a chest cath immediately necessary; so he said he would do the veinogram himself and use only about 5cc of dye.  He said an ultra-sound would not tell him what he needed to know.  During the entire visit he never used a stethoscope to listen to it as the NxStage training nurse had done!!!  And asked more than once, "Who said it wasn't useable?"  and "What did they say was wrong with it?"   Long story short, we got another surgeon.

The new surgeon agreed that it was not what it should be and ordered a doppler ultra-sound which covered every inch of the vascular system from his hand into his shoulder and neck.  He was concerned that there may be a stenosis above the fistula and that was why it was forming collateral veins.  (Thank God, there wasn't any stenosis.)  I asked if he thought dye would be better, and said absolutely not as he would not risk shutting down the kidneys for a test that is only slightly better than the doppler ultra-sound.

Today we had the second appointment with the new surgeon, to get the results of the doppler ultra-sound.  He sent Mike directly to pre-op, and the fistula revision is scheduled tomorrow at 7:30AM -- we have to be at the hospital at 5:30AM.  God, do I LOVE this guy!?!  You bet!!!  BTW, the new surgeon said this revision should have been done in the spring and was surprised that no one had thoroughly examined the fistula until the NxStage training nurse did so on Nov 6!!  His quote, "Someone dropped the ball."   Grrrr  We didn't even know we were juggling.

The surgeon said he will make an incision from the wrist to the elbow and lift the vein closer to the surface and tie off all of the collateral veins.  He said to expect one to two months of healing time, but he said he may revise that time frame after the surgery.

Since Mike will be on the NxStage, and it can be set for slow speeds, he may be able to start sooner if his kidneys fail in the meantime?  Especially, if it is a matter of starting a little sooner as opposed to a chest cath?  Oh well, I guess we'll cross that bridge when we come to it.  I just worry about him possibly having unnecessary surgery for the chest cath, and also worry about premature use of the fistula doing permanent damage.  Oh, the joy of dialysis and we haven't even started yet!!

Mike had blood drawn today for pre-op, and for the monthly BMP ordered by the nephrologist, so we'll soon know his pre-op GFR.

The anesthesiologist said they would try to keep anesthesia to a minimum because of his little remaining kidney function -- that scared Mike and you could see the fear in his face!!  Anesthesia to a minimum?!?!?  So, she assured him they would keep him pain free, he would not remember anything, and that they would be ready with pain meds when he wakes up.

  On a side note -- not one of the people we spoke with throughout the entire pre-op had ever heard of PKD!!!  From the PKD foundation web site: "Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide - regardless of sex, age, race or ethnic origin. In fact, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined."

Hope to post tomorrow with good news -- all prayers appreciated.

[Rerun]

This new surgeon said "someone dropped the ball" but the old surgeon will still practice.  Why the hell doesn't someone NAIL him on this.  The did a shitty job and didn't even know he did it.  Now Mike has to pay the ultimate cost of a fistula revision and God knows what else.  Why are there so few good doctors out there. 

My prayers will be with you.  Just have peace that he is not on dialysis yet.  He can have the surgery and go home and rest and not have to dialyze afterwards.

[kitkatz]

I hope all goes well for Mike.  My prayers are with you guys.

[Black]

This new surgeon said "someone dropped the ball" but the old surgeon will still practice.  Why the hell doesn't someone NAIL him on this.  The did a shitty job and didn't even know he did it.  Now Mike has to pay the ultimate cost of a fistula revision and God knows what else.  Why are there so few good doctors out there. ...

Yep, he's still in the dark, and you're right that no one will do anything.  They cover for each other until someone gets balls enough to confront him behind the scenes, and make the practice or the hospital get rid of him.  Or until the mistake is drastic enough that he gets sued and becomes a liability to them.  He's old but young enough that he may be around another 10 years screwing up fistulas and God knows what else.  I actually wondered why someone his age was so far down the letterhead -- maybe now we know.

...My prayers will be with you.  Just have peace that he is not on dialysis yet.  He can have the surgery and go home and rest and not have to dialyze afterwards.

Thanks, prayers appreciated.  Yes, that is a silver lining -- he does get some time to come home and rest.

[jbeany]

  His quote, "Someone dropped the ball."   Grrrr  We didn't even know we were juggling.

Love that!  They do just keep throwing things at us while we're blindfolded too, don't they?

Hang in there!

[charee]

Wow, Black your scaring me My surgeon checked mine 2 weeks after the op and said going great and no one else has had a look at it since, my next appointment is 11th Dec and they want me to start training early January with a GFR9 I'm hoping mine is going ok Its not very raised yet (its 5 weeks Old) Should it be ?Hope everything works out for you I'll be thinking of you ,keep us posted

[anja]

All my best to Mike, and you also, how very upsetting and frustrating    all this must be.  Hope the revision surgery goes well and he is home soon!

[AlasdairUK]

Wow, Black your scaring me My surgeon checked mine 2 weeks after the op and said going great and no one else has had a look at it since, my next appointment is 11th Dec and they want me to start training early January with a GFR9 I'm hoping mine is going ok Its not very raised yet (its 5 weeks Old) Should it be ?Hope everything works out for you I'll be thinking of you ,keep us posted

5 Weeks is still new for a fistula. As long as you have a good bruit or thrill where the artery meets the vein I would not worry. Is it in a straight line? Do you have any veins branching off it? They should not even think of trying to use it for 6 weeks, or even 8 weeks is better. Once you start using your fistula it will start to mature at a quicker pace. If you have any pain in your hands, or if they turn blue. Thats when I would start to worry.

If you do have any concerns book an appointment with your Doctor/ Surgeon straight away. Rather check and let it be nothing than do not check something. Remember you are only able to dialyse as long as you have an access. Keep it in good shape.

[Black]

Thanks so much for the good wishes and prayers.

Everything went very well.  Actual surgery took a little over an hour.  Mike doesn't remember anything despite very light general anesthetic and mostly local at the surgery site.  Surgeons said he tied off numerous small veins near the wrist, and one major one about half way between the wrist and the elbow -- he said it had expanded until it was almost as large as the fistula vein, just went deeper where it couldn't be easily seen or felt.  (Since no one had used a stethoscope no one knew it was there.   )

He raised the whole thing, incision is from wrist, just above his thumb, to the inside of his elbow, very straight -- no more crooks and bends, and the buzz is now easy to feel all the way to his elbow.   

He will look at it on Mon when he changes the dressing.  He said it will need a minimum of 6 weeks to heal before it will be useable.  Hope Mike's kidneys hold that long!

So far pains has been minimal and controlled with acetaminophen.  I like this surgeon and it appears he has done a great job.

Now I have to update the NxStage training nurse and see if we can tentatively plan for his training to start after the first week of Jan.

[Joe Paul]

Good news, I'm glad everything went well. Hope all continues as good.

[charee]

Great News ,

[jedimaster]

Things will get better....promise. Once you have the machine at home it will be easier....at least you will be a bit in control. Cheers!

[DeLana]

I'm glad to hear it went so well.  Sounds like the fistula will be in great shape for use, but like pp said, don't let them use it too soon (however, it sounds to me like your NxStage nurse is really on the ball - unlike the surgeon  ). 

Happy Thanksgiving!

DeLana   

P.S.  In the worst case, having a perm cath for short term use is really not a big deal and an easier procedure than the fistula revision.

[angieskidney]

Wow, Black your scaring me My surgeon checked mine 2 weeks after the op and said going great and no one else has had a look at it since, my next appointment is 11th Dec and they want me to start training early January with a GFR9 I'm hoping mine is going ok Its not very raised yet (its 5 weeks Old) Should it be ?Hope everything works out for you I'll be thinking of you ,keep us posted

Raising is not the main concern. But if your Thrill and Bruit stop you must go see someone right away (they should've told you who to see. For me it was the Emergency Room.)  Mine stopped after 10 days. It was too late to save it as it was a weekend and I didn't know to go to the Emergency Room because I called the dialysis unit and they said to just come in on Monday like normal. I had to get a new one

[Treasure]

Greetings, all... I have been trying to get a buttonhole established. We've been going at it for over three weeks now... but the blunts are just not going in. Furthermore, each attempt seems to be getting more and more painful. Some of the pain seems to be taking place an inch to the left of one of the buttonholes. After reading what someone wrote above, I think I may have a collecteral vein that's highly sensitive.

 I have mentioned this pain at least three times now...and not much was said by either of the nurses and technicians. However, I did mention it to the Center Manager and she recommended that I contact my vascular surgeon... and I will be following that advice asap.

I did want to hear more about collateral veins...because I've never heard anyone mention  this before. I have googled it, and sort of  have an idea of what it is...but would like to hear about the experiences of people here.

Treasure   <~~~~~~~ anxious to get buttonholes going so she can return to using a NxStage!

[Sara]

Black I have just seen this thread.  I hope Mike's still doing OK. 

[jedimaster]

It took me 3 times longer to get my blunts...don't let them pressure you!....I went home with sharps....now i use blunts...take your time...

[goofynina]

It took me 3 times longer to get my blunts...don't let them pressure you!....I went home with sharps....now i use blunts...take your time...

BLUNTS? BLUNTS?  DID SOMEONE SAY BLUNTS?  oh, you are talking about the needles, ok, nevermind 

[Black]

Black I have just seen this thread.  I hope Mike's still doing OK. 

Thanks, Sara.  Yes, fistula seems to be fine.  He had the dressing removed about a week after surgery, and the stitches removed 22 days after surgery.  Both times they checked it closely with a stethoscope and seemed to think it was fine.

Both of us, and his cousin who lives with us parttime, have had a really nasty bacterial respiratory infection.  Starts like a cold with sinus pain, post nasal drop, runny nose and in 24 hours is full blown bronchitis.  Mike's cousin fought it with OTC stuff for over a week (refused to see doc!!), then Mike got it the Sat before Christmas, and I got it Christmas day.  We all three got antibiotics on 12/26, we're better, but we're all three still pretty sick and still coughing.  It has been really rough with a kennel full dogs to walk and care for, and a house full too.  There was no way I could have taken care of him if he had been really sick -- I had already decided if he got really sick I'd have the neph admit him.  Thank God, he was not nearly as sick as the other two of us were.  he took garbage to the dump today, first thing he's done in a week, and said he was short of breath when he came inside.  He has napped a lot this afternoon. 

I'm exhausted despite a two hour nap myself.  I hate working when I am so sick.  The dogs seem to know I don't feel well and have behaved themselves, but don't understand why "play time" was cut so short.  But, I am getting better than I was on Christmas day and the day after.

His mom has the same bug and has been in hospital for three days with pneumonia.  The people in the assisted living facility were treating her for a viral cold and let her get too sick before they finally had the doc check her.  She's 86 so we have been worried about her, and Mike was very disappointed he did not get to go see her on Christmas day or her birthday on the 26th -- he was already sick and it's a two drive -- two very good reasons not to go.  Oh well, his sister got back into town in time to see that she got admitted.  It could have been much worse and she is improving, thank God.

He goes back to the neph on 1/2 and to the vascular surgeon on 1/12.  I'm hoping if the surgeon gives permission then NxStage training will start soon.  I can't imagine that he will hold at current GFR much longer.

Thanks for asking        for a Happy New Year.

[goofynina]

Hope you all are feeling well soon Lorelle,  what a way to start off the New Year huh?   Have a safe and happy one 

[Treasure]

Greetings, all. I finally got in to a surgeon today about what I thought was a "collateral vein" forming... Doc told me it wasn't a collateral, but a branch vein. *shrug*  Since I'm having a great deal of pain in this offshoot vein during cannulation, I wanted to know if something could be done about it. Doc said he had never heard of the kind of pain I'm having, but we could tie off the branching vein and see if that helps. Bleh.

Today, 6 weeks after we started the buttonholes, we were finally able to use a blunt needle for my aeterial. YAY! Also, I inserted the sharpie on my own,for my venus stick... so I'm stoked about that and know that I can now go ahead and start my home hemo retraining (I had a catheter the first time around and that was super easy, of course).  Everyone made a big fuss about me doing the cannulations...but geez, after reading this and other boards, I don't see what all the fuss is about, hehehe. I know that the staff has been quietly planting the seed about other patients doing this... but maybe I need to make a big noise about it and see if we can't get some other patients onboard before I leave the center.

I have been a bit bummed that it was taking so long to get the buttonholes going-- since I was using that as a milestone to mark whne I should transition back to home hemo.  I had to become resigned to fact that, for now, and possibly forever, my fistula is  just gonna hurt and I'm just gonna have to put up with it-- until I get my next Goddessdamned transplant! hrmph!

[Joe Paul]

Hope they figure out where that pain is coming from, BUT I'm glad to hear you got your buttonholes started and working! Congratulations     

[Black]

...Today, 6 weeks after we started the buttonholes, we were finally able to use a blunt needle for my aeterial. YAY! Also, I inserted the sharpie on my own,for my venus stick... so I'm stoked about that and know that I can now go ahead and start my home hemo retraining ... Everyone made a big fuss about me doing the cannulations...but geez, after reading this and other boards, I don't see what all the fuss is about, hehehe. I know that the staff has been quietly planting the seed about other patients doing this... but maybe I need to make a big noise about it and see if we can't get some other patients onboard before I leave the center.

    Good news!!!  

Yep, make a big deal about it and get more on board.

[jedimaster]

That´s great!...first sharps, then blunts, then Home hemo....the right path....

[letaek]

Hi Black Hope all goes well with Mike