Fistula or Not to Fistula??

[whiskeyfrank]

Ive just had a bilateral nephectomy and during surgery my BP dropped and my upper arm fistula clotted and stopped working.

I am due to have a living donor transplant in 6 (ish) weeks, the problem is the access surgeon wants me to have another fistula on the other arm in 4 weeks time. He is worried that im using lines to dialyse and that a transplant is never 100% guaranteed.

My worry is that i have another lot or surgery in 4 weeks and that the transplant would ruin the new fistula, im also concerned that I'm on lines and Ive been lucky they lasted this long.

If i wait till after my transplant i have to wait again for the fistula to grow, also do i want a fistula if the transplant works -  so im between a surgeon (hardplace) and a surgeon(rock)

[peleroja]

I don't know what you mean by "lines."  Are you referring to a permacath?  As for me, I never ever want a fistula.  Just my choice and one of many reasons why I went with PD.

[willowtreewren]

Frank, I understand your difficulty. However, the surgery to create the fistula is a simple one. My feeling would be to go ahead and have the surgery for the fistula. Transplant is always an iffy thing, even with a living donor. The transplant surgery should not affect your new fistula and then it would be ready whenever you need it.

Remember that transplantation is not considered a permanent cure, but one of many treatments.

I'm thinking about you. These decisions are never easy.

Aleta

[KICKSTART]

I don't know what you mean by "lines."  Are you referring to a permacath?  As for me, I never ever want a fistula.  Just my choice and one of many reasons why I went with PD.

Its gonna happen at some point ! Sorry !

[Lillupie]

no, no, no, please, if you are going to get one, a live transplant, it might last a long time.
 Listen every surgery, and infection you can increases your antibodies, then it might not no longer be a match. This is IMO. Ask your transplant coordinator if getting a fistula will increase your antibodies.
 To be honest with, I really hate how they push fistulas, I know its the best thing, but just maybe you dont want something permanant especially if you are getting a transplant.
 Like me, if i could get a fistula because i have NO idea if or when I am going to get a transplant.

 I am with peleroja

Good luck and follow your heart.

Lisa

[cariad]

I totally agree with Lisa. Why on earth is the doctor telling you to get a fistula when you have a live transplant more or less scheduled? I received the opposite advice from my nephrologist.

I realize you just had a bilateral nephrectomy, and having no kidneys may make them more skittish, but I also had a bilateral nephrectomy in 1976 as part of my live donor transplant. I still have the transplanted kidney and I am still predialysis. The doctors put in a fistula right before my transplant (I had been using a shunt to dialyze) and if I remember correctly, it stopped during the surgery. (I have a vague recollection of my parents shouting at the surgeon over this, and my parents worship doctors, especially transplant specialists. They were angry.)

So, all I got out of that fistula was a scar on my wrist and the loss of an access site.

Live donor transplants have high success rates for at least a few years, and many last decades. You will most likely have enough warning should you need dialysis again to get a long term access placed.

I know it's a tough decision - I am still wrestling with the access puzzle, myself. Good luck with it!

[kellyt]

Is the permcath the one that is placed in your chest/neck area?

When I admitted to transplant (live donor) I had never done dialysis and therefore never used the fistula I had had for one year.  I thought that I was going to have to do dialysis that night before the transplant so I told the doctor "I don't want to use the fistula if I don't have to.  Can you just do the catheter in the chest/neck instead?"  And he replied "Absolutely not.  That is not something you want to do unless it's absolutely necessary".  Risk of infection and all with the catheter being so close to your heart.  Luckily I didn't have to do dialysis that night.

I don't know what I would do if I were in your shoes.  Sorry.  Good Luck!

Oh, and I hope your future transplant works perfectly and a very long time!!!   

[Hanify]

How long has the tube been in?  I used the permacath for 4 months and it was no problem.  Someone else on here has been using the tube way longer that that.  I'd hold off I think - who needs one more surgery if you don't need it?  This is assuming the tube is in and working ok already.

[MissyKew]

No advice here, cause I really don't know, but a big congrats on your impending transplant. 

[pamster42000]

Why don't they just put a subclavian access in your upper front shoulder area?  It can be used right away and isn't so invasive as a fistula. If you are planning on a getting a transplant in the near future I would ask about it. I hope I am saying it right...it's been awhile since I have been involved in all the lingo. When you get the transplant and it starts functioning well the subclavian access can be pulled out when it's no longer needed. I watched the Dr pull it out on my daughter.....it probley isn't a fun experience but it only takes about a minute. Just leaves a small scar. Don't have to wait for a fistula to mature either.

There is always risks in any type of surgery. Sarah had the subclavian access for over a year and never had an infection from it. She was age nine at the time. She couldn't go swimming etc.

Just a thought....

[jbeany]

Add me to the list of people voting for no fistula right now.  You can dialyze with the cath, and save the fistula spot for when the transplant fails - theres only so many of those spots to use, so why use up one you aren't likely going to need?  My graft, which had worked perfectly for over 3 years, also clotted during my transplant.

[Ken Shelmerdine]

Is the permcath the one that is placed in your chest/neck area?

Just to make clear. The 'lines' refered to are actually known 'tessio lines' in the. UK. They are two dialysis lines inserted in the neck and emerge from the chest . In the US I believe  a permacath is similar.

[KICKSTART]

Is the permcath the one that is placed in your chest/neck area?

Just to make clear. The 'lines' refered to are actually known 'tessio lines' in the. UK. They are two dialysis lines inserted in the neck and emerge from the chest . In the US I believe  a permacath is similar.

Just to add Ken... they are also known as Tunnel Lines !

[whiskeyfrank]

Thanks for everyones thoughts i think i know what i want and planning to see the transplant surgeon next week to discuss this further.

Its odd that the access surgeon hasn't spoken to the transplant surgeon but i guess that what happens in these busy times.

Sorry for the confusion Ive only ever known them as lines even though i think its a permacath, all i know is it goes in my chest and across my neck into my heart.

[RichardMEL]

Normally I am a big believer in fistulas because they ARE the best form of access for dialysis but in this situation it does seem crazy to create a fistula on the other arm (which would be the dominant one I presume) - I mean if it's created in 4 weeks it wouldn't be useable for at least a month after, and if all goes to plan you'll be transplanted by then - so you'd be creating an access that hopefully won't need to be uses for *years*(and something could happen in the meantime anyway). I would say no to the fistula and go with the permacath for the next 6 weeks - it's not that long and fingers crossed the transplant goes through for you - that fistula can always be created down the track if, and when, you need it.

[HAM OP]

Hi, I first received a catheter in the chest in Aug 2008. I had surgery on my left arm in Feb 2009.  The fistula went flat the day after surgery and has not been useable since.  My left hand now has a bad finger tendone from the surgery cutting my muscle in the arm.  Also now I am on pain killers every day.  I take one to two oxycontens and 5 to 7 vi condines.  Nerve damage from the surgery has made use of my left hand worthless.  I am still on the chest caterers and going 3x a week for 4.5 hours.  I will be going on PD next spring.  If I were you I would use a chest caterer until the transpant surgery.