4 surgeries, still no working fistula

[misslynette]

I posted on another thread that we just found out today my husband can't have a transplant. Liver problems.

So while he's been waiting on that news, he's been hoping to get out of that clinic chair every T-Th-Sa. We first saw a surgeon in July to discuss peritoneal. As a result of that discussion, he decided he'd rather do home hemodialysis (swimming, snorkeling, activity things that would be better with a fistula).

Now I'm trying to remember if, in that conversation, that surgeon told us he didn't usually do fistulas? I wish I could just rewind. I know he mentioned the master vascular surgeon with his practice.

This guy is not a vascular surgeon.

My husband is really, really thin as a result of a month in the ICU and being so horribly sick for a year. His veins are teensy.

His fistula is upper arm, there's nothing in the wrist or forearm.

First surgery appointment, knocked him out, then cancelled the surgery. The planned spot to connect wouldn't work.

First real surgery, cut into the bend of his elbow, did a T-bone connection artery to vein (or whatever)

Second surgery, brought that connection up to the surface of the arm for easier access. After 3-4 weeks, a huuuuuuuge pseudoaneurysm developed  in that arm and the thrill was gone.

Third surgery, started on the other arm (the one we were first told had insufficient veins for a fistula). Another big incision in the bend of the elbow. It has been four weeks and it still leaks a little. About a week after the surgery, the thrill vanished and we went to the surgeon's office. Saw a big clot or another pseudoaneurysm possibly above that. Scheduled fistulogram for the next week.

Two days after, the pain in that arm was so unbearable that he ended up in the hospital where he stayed for 5 days. An arteriogram showed no problems inside the vessels, but maybe infection. He got two doses of Vanco, then the actual surgeon dropped by (this all happened on a weekend), and said no infection, no clot, no pseudoaneurysm.

I SAW that huge black emptiness above the joint in the veins on two separate ultrasounds done by two operators three days apart. It wasn't "artifact."

Fourth surgery, a week ago to remove the pseudoaneurysm on the first arm. Now there's a giant seroma that swells up 2-3x a day and if he presses on it, will squirt fluid across the room. 

So back to the same surgeon yesterday and he's talking about the FIFTH surgery on this arm. He says the vein hasn't enlarged much (or artery, whatever), but will do better once he ties off all the branches, etc.

My question is this: This guy is not a vascular surgeon. Any thoughts on the possibility of a real vascular surgeon taking this on at this point? This is like his last hope of getting a fistula, which gets the NxStage, and our freedom to travel.

I'm scared of asking for another surgeon and scared not to. Don't want to piss this one off if he's what we get, but don't really trust him to do it.

Thoughts? Suggestions? My husband's not a wave-maker for any reason, but I can make waves if I have to.

[bleija]

if your not happy get another surgeon, i had a pd cath placed with a faulty connector, i went back to him for another surgery too. then i switched surgeons, and the new surgeon saw the faulty peice and corrected it... i say go to a vascular surgeon... i know its not the same but i understand how your feeling

[Marsh]

He needs to find a vascular surgeon.

[willowtreewren]

Absolutely! VASCULAR SURGEON!!!!

Your husband should not be subjecting his veins to a surgeon who doesn't do this regularly. Get the BEST vascular surgeon.

Good luck! NxStage is the way to go! 

[fearless]

just my opinion, but if he's able, he might want to do PD.  I think he may be able to get away with the water sports if he's very very careful.  Especially if it's ocean-going.  I was told i could only swim in saltwater.  But i did PD for eight years with no catheter infection, and I did go swimming.  It wasn't regular, but I'm just saying, if you're really really careful and follow up with good practices I think you might get away with it.   It's so much easier to travel on PD.  And when you're not actually performing the exchange, you're free, whereas with hemo you have to be hooked to the machine for a certain amount of time regardless.  Also, if he gets on a cycler (a machine that pumps the fluid in and drains it out) he can do that while asleep and be even more free during the day.

Whatever course you follow, I wish you the very best.  And if you do go with hemo, I definitely recommend the same as others here: get a good vascular surgeon.
Perhaps you can let the guy down easy: "we've chosen to go another direction" (meaning: in the direction of a better surgeon!) 

[bleija]

or just dont say anything, i switched clinics, therefore switching nurses, and doctors... ignorance is bliss for him anyway

[lmunchkin]

Absolutely, get a Vascular Surgeon.  Do not feel bad about asking for one either!  You need to think about hubby and do whats best for him, cause he may be too sick to know any better.  We have to advocate for them at times!  Be bold and firm and insist on a "second opinion".  It is your right!  What does his primary doctor suggest?  Surely a vascular surgeon.  When it comes to veins, get a VS!!!!!!!!!!!!!!

lmunchkin
 

[sullidog]

I just went to another surgeon, just left didn't say a word.

[misslynette]

It's been so strange since Mike's been in dialysis. For the last 10 years, I've been included in every doctor visit, procedures, all of it.

Since he's been in dialysis, the docs just wander through. He hasn't seen a nephrologist in an office ~ like a real appointment ~ since he started this mess back in April. It all seems so haphazard to me.

The vascular surgeons are in the same practice with this guy.  I might email the nephrologist and see what he thinks. He's been really good about getting back with me.

Thanks for the input people. Much appreciated.

[lmunchkin]

You could probably do like Sully did, just leave and go to another vascular surg.  But beware, make sure it will be paid for by whatever insurance you have.  And definately see what your nephrologist suggest, but beware of that too, cause those doc's do stick together!!!!

Just hang in there, Lynette, you will find one!  Keep us posted.

lmunchkin
 

[sullidog]

I just wanna include that my v surgeon is not in practice with my neph and my neph doesn't seem to have an issue with that, in fact I tried switching to a v surgeon in the same practice but they wouldn't let me, something about not making the other guy look bad or something.

[misslynette]

Two problems: As far as I know, the only vascular surgeons are in this huge surgical practice at our base hospital.

IF we switch, we'd have to go out of that system.

If we switch and it STILL doesn't turn out, then it's kind of my fault for pushing the issue   

I don't know what to do. He's leaking massive amounts of fluid out of the arm they repaired two weeks ago. It's something called a seroma, and because he has almost NO fat anywhere on his body, this non-vascular surgeon couldn't do anything to make it better. He says.

I kind of hate most doctors and believe about half of what they say. Long terrible history with them.

And don't even get me started on the ego thing.

 

(That's me with the club, Drs. Hoyt and/or Tatum and/or Rooks on the left)

[Love my son]

You know what to do.  You are on the right track. You know something is wrong.  You even have the solution.  VASCULAR SURGEON!!!
Ask your neph for a referrel to a vascular surgeon.
If the neph won't refer you , call the vascular department yourself.
You are on your way to be an awesome advocate!

[Riki]

I agree with everyone else... go to a vascular surgeon.  The other surgeon shouldn't have touched him if he wasn't sure what it was he was doing.  Vascular surgeons do these all the time, and would probably be able to fix the mistakes of the first surgeon.  The neph should have referred your husband to a vascular surgeon in the first place.

[KraigG]

My fistula was installed by the transplant surgeon. Yes, the guy would put in a new kidney. But it still doesn't work, and it's over 5 months now. I'm not going to go through multiple surgeries.

I'm having a pretty good time with the catheter in my shoulder. No pain, no problems, no infections, and I can live without going swimming again.

[fearless]

Kraig G
i very much encourage you to press on with the fistula - are you exercising it?  Some peoples just take longer to develop, but in the long run it is much better for your health long term.   There's lots of information about this online.  You might start with "Fistula First".  What does your surgeon say about the fistula?  Has he or she pronounced it unusable?

You don't want to go without a shower forever. 

I got mine last June and we're still working with the smallest needles (and having a few problems at that).  But I'm determined to make it work.  I hope you can too!
cheers

[dyann]

I really understand what you r saying  I am on my 6th fistula I currently have one working and the other is in the growning stage my arms are all cut up, I do see a vascular surgeon, however I have clotting issues and this has caused issues, but I agree you need to see a different surgeon someone you feel comfortable with and trust.

[lmunchkin]

Yea, Dyann, my hubby had clotting issues too.  They prescribed Plavix, and clotting stopped. 

It did take his VS several visits to get it to where it worked perfectly.  2 years and more, it is still going strong.  But when they first did it, it was not without problems.  The viens were there, but where fistula went, it would sprout little veins, and VS would go in and tie off.  Now, it has not been any problems.

I agree with Fearless, just hang with it and it will all come together.  You will not regret going with a fistula.  I don't know, I guess people have a problem with the way they look, but who in the Hell cares.  That is your lifeline! At least you won't have to worry everytime about it getting infected if you "Spit" on it or something!  lol   

Seriously, hang with it!  Rome was not built in one day!  If you have someone other than a VS doing it, then change to one!

lmunchkin
 

[KraigG]

Fearless:

Who said anything about going without showers? I take one every day!

My catheters are airtight, and closed with sterile caps. If I haven't had an infection in 5  months, unless some procedure changes, I doubt if anything serious is going to happen. I see more troubles with fistulas and needles in my center than I want to experience!

[fearless]

Kraig G,
I think it's wonderful that you are having a great experience with your catheter.  But you are an exception.  Every year people die from catheter infections, because they are a direct line into the blood/heart, and bacteria can cause sepsis quickly.  I too still have my catheter, and I have found a way to shower with it protected.  But I do that as infrequently as possible because getting water on the catheter site can introduce bacteria to the insertion spot - a place for infection.

So, although I'm not wiling to give up my catheter until I feel more secure at getting the dialysis I need without infiltration or damage to my fistula - I am eager to have my catheter removed in order to reduce the threat of serious infection, and ease in showering!  And although I've had no trouble, i could never encourage anyone to keep their catheter longer than needed because it's risky.
cheers!