Bad - Deep Fistula

[Wat76]

Hi Everyone,

I am so disappointed, my Vascular surgeon who is suppose to be the best just informed me that my fistula is too deep and that I will need to have another surgery to get it lifted because it is no way the D center will be able to get to the vein.  I asked him why he did not explain that to me after the surgery instead of waiting for me to come back and get more bad news.  I am so disappointed and I am going to find another Doctor and Hospital to go for my care.  I have had it with this hospital.  I did everything they told me to do and they knew it was probably a waste of time.  I told you I was not feeling anything, no thumping, vibrating or nothing.  I don't know what to do now, he says if I have to go on emergency D, i will have to have a Perm Cath put in.  This is so crazy, as soon as I get back from vacation, will be looking for another Doctor.  I am beyond pissed. Anyone else out there who had two failed surgeries.  What is next, I am afraid to ask this question.  I do not want a perm cath, or what ever you call it.  My GFR is 15 as of today and I am scared as heck. Scared to sleep, scared to eat, scared to do anything that will make me sick and cause my kdiney to speed up.  This is just to stressful

[KICKSTART]

I have to have the same surgery that you do , but im having it all in one go !  I could have had the fistula made first , like you, then once we knew it was working had it lifted or chance having it all done at once. Ive decide to chance it , rather than 2 ops. I have a perm cath in now , not much you can do about that im afraid, if you need it , you need it !

[okarol]

Jenna had a permacath for 6 months while she had fistula surgery (1st failed, second time with a different vascular surgeon, worked great) and she had no problems with the permacath. I know people who have had them for a couple years. Don't be afraid - if you need it - it will give easy access while you sort out the fistula situation. I am sorry you've been through 2 surgeries, you have every right to feel frustrated. Just a suggestion: the first vascular surgeon was a referral through the hospital - big mistake, The next one was through the dialysis nurses (they know who does a good job and who doesn't.) Good luck!

[MooseMom]

Okarol is right about asking a dialysis nurse for the name of a good surgeon.  My mother's first fistula failed; she was on a cath for 18 months before she changed surgeons and got a fabulous fistula; her dialysis nurse told her to go back to the vascular surgeon who had repaired her aortic aneurysm.  She did, and the rest is history.  Good suggestion!

[cookie2008]

I had numerous surgeries I know and understand how you feel.  If your fistula is working even though it is deep, why not just have it lifted it will be healed  in about 1 to 2 months.  I had 3 surgeries on my right arm by 2 different vascular surgeons none of the surgeries worked.  Had about 5 permacaths thru out.  I had an avfistula put in my left upper arm and this one turned out beautiful but it was to deep and the nurses was having a terrible time placing my needles so I asked the vascular surgeon to lift it and he agreed my scar is from elbow to arm pit but I dont care because it works and it is a beautiful lifeline scar, and my husband Dave puts my needles in at home on Nxstage. Best of luck with what you decide.  Cookie

[sullidog]

My neph refered me to mine, the weird thing is his partner is an idiot, so yeah go with your neph or dialysis nurse.
I had two permcaths, one got infected, but luckily it got infected after they were using my access so was going to come out anyways.
Troy

[Zog]

Don't be afraid of a perma cath.  When my wife was pregnant her fistula had only been in for a few months and was too deep.  They didn't want to revise it because she was pregnant.  We had to use a permacath for 13 months.  Our daughter's birthday was determined by the day her catheter got infected.  The only reason it was infected is because the hospital exchanged it a few days earlier because the first one was clogged with fibrin.  If you do have a perma cath, keep it clean, make sure everyone is wearing masks, fresh gloves and soaks it well in Exsept before use.  Check your temperature and blood pressure if you feel off.  Fever + Low Blood Pressure = Infection = Sepsis = Septic Shock = Dead soon.  We fortunately were able to stop the infection with Vancomycin before Jenn went into Septic Shock.

Her "deep" fistula was deep because of a stenosis (vein narrowing) in her armpit and the fistula didn't mature (get big).  They put four stents in it and it got big enough to stick, however it stopped working well about two months ago and Jenn had to have a basilic vein transposition, basically a new fistula (same arm though).  She has a cath in her leg now while the new fistula matures.  Her father (a transplant patient) never had a good fistula and had to get a graft.  Jenn's first fistula that she got as a teen was created using a transplanted vein from her leg into her wrist in a procedure our current surgeon had never heard of.  Everyone's veins are different and different at different times in their life.

I hope everything turns out well for you.  Think carefully before you decide to switch horses in the middle of the race.  You may be back to square one if you go somewhere else.  A whole new work up of fistulograms is not cheap.

[VictoriaG]

i definetly agree with asking the dialysis staff about the best surgeon- that's how we found ours.

and i do understand people not wanting to get a permacath! first off, no showers or swimming, but mainly the risk of infection- been there, done that, husband shook hands with his maker! plus the dialysis is much better with a mature fistula than a permacath and we have the labs to prove it.

there is a patient in our dialysis center who has a very deep fistula- they order special needles just for him, but it's hard for the less experienced staff to find. it's a shame that people should have to suffer with less than good fistulas. as if the needles and dialysis aren't bad enough!