Getting a Fistula

[mitchell596]

My husband is actually the one with CKD, but I wanted to ask some questions about fistulas for us. His nephrologist just said that he needs to get one right away, but the surgeon is out of town right now so we can't talk to him yet.

I was just wondering if there are any physical limitations with having the fistula. Can you still lift things? Can you swim and be in water? He's very young and we're concerned about him still being able to be active. Thanks for the help.

[M3Riddler]

My husband is actually the one with CKD, but I wanted to ask some questions about fistulas for us. His nephrologist just said that he needs to get one right away, but the surgeon is out of town right now so we can't talk to him yet.

I was just wondering if there are any physical limitations with having the fistula. Can you still lift things? Can you swim and be in water? He's very young and we're concerned about him still being able to be active. Thanks for the help.

mitchell,

It will take a few months for the fistula to mature in order to use. You should never have a blood pressure nor have blood work taken from the arm that they use. You should not wear any tight clothing /watch that may cut circulation off. There is limit to the amount of weight you should lift, especially during healing time. You want to protect the arm as much as possible. There is no reason why you shouldnt be able to swim. Just because you are on dialysis, does not mean that you can not have an active life. Dialysis is portrayed as you being sick and you should just sit around all day being sick and letting everyone know that you are sick...it is not like that.. You can do pretty much anything you did before on dialysis..

Has your nephrologist spoken to you about the different types of dialysis including pd and home hemo dialysis?
They also should be giving you literature on the fistula and dialysis as well. This is their duty to be informing you about your options and answer any questions....

You can learn more about fistula's at www.fistulafirst.org

http://fistula.memberpath.com/Patients.aspx

You will also want to ask about forming buttonholes after your fistula is created and ready to use. This is where you use the same two spots to cannulate each time instead of using sharp needles in different areas. Buttonhole needles are dull. Since you are using the same tract/spot each time, they can help prolong the life of the fistula since you are not using sharps and scarring up the area. You can read more about buttonholes here:

http://www.fistulafirst.org/LinkClic...w%3D&tabid=105 and
http://www.esrdnet5.org/Buttonhole_Ball-3-30-10.pdf


Do your research before you visit the surgeon so you are prepared beforehand to ask questions. Take a tablet with you with the questions written down as many leave the office and realize they have forgotten to ask something... No question is too stupid or simple to ask... You have to be your best advocate....
You may want to ask:

1. What size veins/arteries are you most comfortable working with....
2. What size veins/arterise do yo not not work with.
3. Ask about post operative care of the fistula...

Many surgeons will only with a certain size vein/artery. They may tell you that your veins are too small. This may just mean they are too small for that certain surgeon. Many will not work with a vin under 3 or 4 mm while there are other surgeons who are confortable working with a vein of 2.5mm. Yes, the larger vein, the better the outcome, but just because you have small veins doesnt mean you cant get a fistula. If the surgeon automatically wants to put a synthetic graft in and your veins are over 2.5 or 3mm, get a second opinion from another surgeon that is not affiliated with the current...It is your right for a second opinion.
The United States ranks last in the creation of fisutulas. Many automatically just want to put a synthetic graft in. I encourage you to read the following article:
American Surgeons are Still Last
Dont forget to read/download the slide presentations...

One thing you may hear from your nephrologist is: "This is the best vascular surgeon around" I think everyone is told this from their nephrologist. Try to find a vascular surgeon who is in an area that contains numberous dialysis centers and is experienced. Dont let a training surgeon do the surgery. Your fistula is going to be your lifeline.....You want the best care for it....

Feel free to ask any questions... Hope this helps...

///M3Riddler

[mitchell596]

Wow. Thank you so much for all of the info. We are a little overwhelmed right now. Our nephrologist has recommended a surgeon, but I need to do some research on him.

Some of my husband's favorite hobbies are surfing, swimming & boating, so of course he wants to be able to maintain his lifestyle through all of this.

[mitchell596]

And as far as her discussing dialysis with us, she is recommending that he do home hemodialysis. He's only 30, still works full time, lives a very active lifestyle, so it seems that this may be our best option.

[metrogirl]

And as far as her discussing dialysis with us, she is recommending that he do home hemodialysis. He's only 30, still works full time, lives a very active lifestyle, so it seems that this may be our best option.

My boyfriend had the fistula done on March 1st and ended up needing hemo on June
28th. His fistula was usuable but wasn't quite mature so he endured a lot of pain the first week of dialysis. His arm was severely bruised and very swollen. After the second and third week he was doing better with it but he got a back sticker the other day and started having pain again.

He was able to work after his fistula surgery though, I think I was off for two weeks. The doctor just told him no heavy lifting and to watch that he didn't bang his arm while working. (He works in the maintenance dept for a bus company). He did well, no injuries to the arm.

[mitchell596]

My boyfriend had the fistula done on March 1st and ended up needing hemo on June
28th. His fistula was usuable but wasn't quite mature so he endured a lot of pain the first week of dialysis. His arm was severely bruised and very swollen. After the second and third week he was doing better with it but he got a back sticker the other day and started having pain again.

He was able to work after his fistula surgery though, I think I was off for two weeks. The doctor just told him no heavy lifting and to watch that he didn't bang his arm while working. (He works in the maintenance dept for a bus company). He did well, no injuries to the arm.

Thank you for your response. Hoping he won't have to take much time off since he's self-employed. Hmmmm. Something to think about.

[Harriet]

Boy, M3Riddler gave you some surpurb information and if his doctor says he should get the fistula, that means he does need to get it done so it does have the time to mature before use.

I feel I must say something about homehemo or NxStage. It is wonderful. The patient, me, feels so good, but there is something else that needs to be considered as well. When my husband and I started NxStage, all was good. But after we got home after all that training, he was so intimidated and afraid that he would hurt me or worse, that it ended abruptly. Not everybody is able to be a partner. It was a lot of work on him, working, shopping, cooking and doing dialysis with me every day (6 days to begin). It takes a long time and takes a good bit of strength to set the cycler up and though the treatment is only 2 hours and 23 minutes in my case, the total time is over 4 hours. Then there are all the supplies that have to be lifted and rotated.

I am not talking down NxStage or homehemo from another company. I'm just saying that to be a partner (and he has to have one) you need to be completely flexible with your time and confident enough in yourself to handle the stress of the process.

I wish I was still on NxStage, but I completely understand my husband's "perdickament". And I am having to readjust back to in-center dialysis which is different to say the least. It's just that I believe everything should be explained fully on the first day of training as clearly as can be.

[mitchell596]

Harriet, thank you for your response. I am currently only working part time in order to have more time for my family. My husband is still working full time, so helping keep up with his medications, doctor's appointments, etc has become part of my new "job".

I will tell him that I'm willing to attempt it, but if it's overwhelming we'll have to try in-center.

[IHaveFaith]

Mitchell,

If you don't find all the answers here in the forum, you can click on the Davita home page in the upper left hand corner and look over the entire site, there is a lot of information that may aid you with dialysis options as well as any questions you may have.

[Leautonia47]

Thanks M3Ridler, you answered my questions as well, I just recieved my fistuala 9/9/11 and it is healing well, although I did not know what all my restrictions were i ask questions to help along the way. I have this weird sensation on my arm tingling feeling and a little numbness, I am wonderring is this part of the healing process?