Access Question

[George Jung]

I am wondering if anyone has skipped the lower arm fistula and gone straight for an upper arm access.  I went for a vein mapping today.  The doctor told me he did not want to do an upper arm before trying the lower first.  He said it would be like burning a bridge and leave me with one less possible access point.  My thought was that I have another arm and two legs.  This doctor also said that he would not want to do a leg fistulabecause they are not as successful and people can have problems with them sometimes resulting in loosing the limb.  Another thing he told me was that people die from running out of access points but couldn't I have the option of PD if and when that became a situation?  I am looking for information to help me make a decision on where to have the access put in.  I perfer an upper arm fistula but I want to make the best decision.  Thanks.

[okarol]

Jenna went directly to upper arm - I think they agreed to it mainly due to her age and cosmetics. They did say she was giving up the option of a lower arm access, but we were hoping to get her a transplant and she decided on the upper arm. The first one never worked but a great vascular doc redid the same spot and saved that vein/artery. It took 6 months to develop to a workable site and, as you may remember, it failed the week of her transplant.

[Adam_W]

I had a lower arm fistula done, but it failed before it ever had a chance to mature. I just met with my surgeon, and he's going to try the upper arm fistula, and if that doesn't work, he wants to try a graft. I've agreed to all of this, but I'm hoping the upper arm fistula works.

Adam

[Sara]

Joe's was put in his upper arm.  I'm not sure why, or if they even discussed about upper vs. lower arm.

[jbeany]

I'm not sure I understand why doing an upper arm one would stop you from getting a lower arm one later.  Does the upper arm one cut off too much circulation to then move the next one down?

Personally, I wish the lower arm stuff I had done had actually worked.  With the upper arm graft in, it's very difficult to get comfortable in bed at night.  Also, I'm very limited on what I can lift or carry now, and any amount of what used to be normal use leaves me in a lot of pain.

[glitter]

my husband had too many lower arm injuries over the years- he has had to start with an upper arm, but they really wanted him to use his forearm-his fistual starts at his wrist and goes up to his shoulder, every now and then they will run one needle in his forearm and one in his upper arm, He says it hurts sometimes- I wonder if the leg is more painful?  

[jedimaster]

I have an upper arm from day 1. It works just fine and I take care of it as much as I can. They told me that my lower veins were too small to do lower arm. In any event I am happy with what I got. Works 100%... .

[Amanda From OZ]

I was told you should always start with a lower arm fistula. And i am pleased and happy i choose to go with that option. 

[Rerun]

If they are complaining that you have small veins then go straight to the upper arm.  Why screw around to let the guy "see" if he can do it.  If they say your veins seem to be fine then go with the lower arm and keep your upper arm as a back up for the future.

Just my   

[charee]

I agree with Rerun as when i got my I had vein mapping and was told my veins in the lower arm were to narrow and I would have to have an upper arm one.Wake up from surgery and i have a bandage on my lower arm near my wrist the surgeon tells me he thought it was worth a try just in case it worked but of course it didn't from the start so then i had to wait a week and go back under and have the upper arm one done and it worked so i had to have 2 surgery's and 1 really was for nothing as they knew from the scans that it wouldn't work.Also I have been told here that they don't like leg ones as they are more prome to infection.

[kitkatz]

I have had a graft ont he lower left arm that clotted twelve times in two years, then an upper arm graft that has worked for almost six years now just fine. Thank the Lord very much!  I have also had them try a fistula in the lower right arm. A huge waste of time there as it failed in three days. It also hurt the most when it was healing.

[tamara]

I've got an upper access. after the mapping the surgeon said that was the best place.

[Black]

  Your doc is right; you would be burning a bridge which you may really need later.  There is nothing more important to dialysis patients than having a good working access.  Protect your arm veins, have blood drawn from your hand, and IV's inserted in your hand.  Insist on a VASCULAR surgeon who does MANY fistulas EVERY month and will only do your fistula AFTER vein mapping is done.  Sometimes, as a last resort, and if you're really lucky, a small graft can be inserted very low in the arm and later that segment of the vein above the graft will enlarge enough to later use in a natural fistula.

If a surgeon says a lower arm fistula is not possible GET A SECOND AND THIRD OPINION.  Yes, it is that important.

Leg fistulas take a long time to heal, more difficult to use, and take much longer to form a clot which will hold against the high blood pressure exerted when you stand up after dialysis.  Having blood spewing in your pant leg and puddling in your shoe an hour after dialysis is not fun, and dangerous.

Points to think about:

Most PD patients eventually have to go to HD.

The life span of HD patients is substantially longer than PD patients.

The length of time on PD before HD becomes necessary is often less than two years, and often due to things which the patient cannot control.

A natural A/V Cimino fistula is considered the gold standard, the most desireable, for many reasons.  (see the links below)

Most dialysis patients who are told they cannot get a natural A/V fistula in the lower arm are being told that by an ignorant, or unskilled, or incompetent person.  (By the time we're dealing w/ ESRD, we've all met at least one idiot in a doctor suit.)  They say, "it can't be done.", when they should say, "I'm not skilled enough to do it."

When all access sites in the arms and legs have failed the only thing left is the neck/chest catheter many patients get temporarily while their arm heals.  The death rate from infection in those catheters is very high.  Also, be aware that an incompetent surgeon can damage the subclavian vein with one of those in a new patient and make the arm veins on that side of the body unusable.

Anyone who may need dialysis in the future should be using a squeeze ball and arm curls to enlarge their arm veins as much as possible before they need the surgery.

Check out the following two links.

http://www.fistulafirst.org/tools.htm

http://www.kidney.org/professionals/kdoqi/guidelines_updates/doqiupva_i.html#doqiupva7

Hope it goes well for you and keep us posted.

[Meinuk]

Most dialysis patients who are told they cannot get a natural A/V fistula in the lower arm are being told that by an ignorant, or unskilled, or incompetent person.  (By the time we're dealing w/ ESRD, we've all met at least one idiot in a doctor suit.)  They say, "it can't be done.", when they should say, "I'm not skilled enough to do it."

I have to say that is HARSH.  I have an up arm fistula that was placed by my transplant surgeon.   The decision was made due to the physiology of my arm. 

That being said, Black's post had some great advice.  We all need to proceed with caution when it comes to our medical care, but, we need to keep perspective as well.  We on a whole are self-educated  I know that living with a chronic disease and navigating the murky waters of the health care system can make us become angry, dismissive and bitter - but we need to weigh our options carefully.

I have walked out of a Dr.'s office, disappointed and vowing that he was "an idiot" - but I have also dismissed a nephrologist who I thought didn't have a clue, and with time I have come to realize that she is one of the best nephs that I have ever been treated by (and when I lived in Boston, I was treated by some of the best, Dr. Nina Tolkoff-Rubin and Dr. Ted Steinman).  I'm lucky, I have good insurance and I live in NYC.  It is easy to go to the top of the medical heap when you are in my situation. 

If you are reading these boards, then you are already researching.  If you haven't gotten you access yet, make sure that your surgeon is board certified.  (FACS - Fellow the American College of Surgeons)  Have your nephrologist recommend more than one surgeon (if available)  for fistula placement, you have some time to make the appropriate decision.  (you will never be emergency dialyzed via fistula, as it needs weeks to mature - I had mine placed 18 months before I needed to use it)  My only other advice at 1:48 in the morning (ESRD insomnia) is ... if you do find yourself dismissing someone's advice and you decide that they are an idiot, consider your mood, your stress level and the fact that none of this is information that we want to hear.

(I promise that when I finally snap, and write a long rant about idiots, you can do a search and throw a quote of this post in my face!)  I'm going to hit post now, and then surf over to the Redneck Dialysis thread  (highly recommended, pretty damn funny)

[Black]

Meinuk,

I understand what you're saying, and in the UK that may be true, but here in the US there were so many patients told they could not get a natural A/V fistula that a government agency had to get involved.

In some clinics there was not one patient with a natural A/V fistula.  (Dar/LifeOnHold visited one of them, and that was just ONE of the problems she found there.)  I don't recall the exact stats but I think less that 30% of patients were getting natural A/V fistulas and it was estimated that the number should be 80% or higher.  check out http://www.fistulafirst.org   I stand by my assertion that most dialysis patients who are told they cannot get a natural A/V fistula are being told that by an ignorant, or unskilled, or incompetent person.

The first surgeon told my husband that he had less than 25% of getting a lower arm A/V fistula because his veins were too small, and he would probably wake up with a graft.  The second surgeon put in a natural A/V fistula which later needed revision by a third surgeon.  He now has an excellent natural A/V fistula.  He started dialysis 7 weeks after the revision and was running at 500 just three weeks later.  Two weeks later I was using his buttonholes without a tourniquet.  If we had not pushed to get what he needed, he wouldn't have gotten it.  If we listened to the first surgeon he would more likely than not have a graft and/or his lower arm have been unusable for the buttonholes and frequent sticks needed to use the NxStage.

[keefer51]

I have a upper arm fistula on my left arm. It works great. I do however have a great deal of pain once the needle is inserted. The cream is great but only topical. When a fistula was discussed my neph. of course hooked me up with his buddy. The guy was unsucessfull. He tried twice and they never took. Of course it was my fault. At least my bodies. I saw another doc. the nurses gave me his name. He was sucessful in developing a upper arm fistula. I am told it is a gold mine. The fistula is greater than 2000. Although it gives me a great deal of pain that the idiots don't know what to do about. My urr is now 78%.

[skyedogrocks]

Rob has both.  He originally had the lower arm fistula put in and developed some complications about 6 months ago.  It took a long time to mature and he was getting small clots in it.  About 2 months ago he had an upper arm fistula put in.  He went to a different vacular surgeon for this.  His surgeon doesn't suggest a lower arm fistula for people who are very phyiscal still.  He says it's better in the upper arm.

So far Rob hasn't had to use it, but there may be a day he does and he's glad he has the option.  Since he started using the button hole technique due to home dialysis it really has improved.