Fistula

[jodaer]

I want to share that I got my fistula Friday. I was nervous about it, but it all went great. I can already feel the thrill and see is sometimes too. That surprised me as I thought it took a while to develop. It's a brachial AV fistula. Another thing that surprised me is they put under general anesthesia. I seem to remember many here saying they had a block on the arm and was just sedated.

[Bassetmommer NKF Ambassador]

Good for you Jodaer. Now You have to be careful. Do not lift or carry anything for while. Be careful getting up out of chairs and bed. I also was put out for the surgery, which was good because it was much longer than they expected. Over two hours on the table.

[Beachgirl32]

happy for you that your work has my on sept 13 but my didn’t work . Surgeon said most people have it where there is a spilt by the elbow so easy blood flow but my spilt is not by the elbow my spilt up by the shoulder he said that why my didn’t work . I was put to sleep but I had a nerve block in arm before I was put to sleep . I am going to have to get a graft now .

trying to put picture on here so you can see spilt by elbow .you will have to click on picture to make it bigger to see

Fistula

[jodaer in reply to Beachgirl32]

I'm sorry yours didn't work. Mine is right above the elbow. Thanks for the picture, it's very good.

[Beachgirl32]

that same place they put mine just glad your work

[jodaer in reply to Beachgirl32]

So far anyway. I guess we'll know for sure when it's time for dialysis

[ShyeLoverDoctor]

I have heard of only one person who had a nerve block in their arm. Everyone else it was GA.

Sounds like you are off to a good start. Ask your surgeon when it safe to start squeezing a ball in that hand to further encourage blood flow. Do that as much as possible, even once you start dialysis for the first few months.

Keep checking the thrill daily. If it’s ever not there or significantly weaker, call your surgeon’s office right away. If it’s clotting you have only a few days to save it if that.

Nephrologists love a patient with a fistula since it doesn’t have the same risks as a chest catheter. I too got mine ahead of time.

A fistula is actually a big deal.

“Do. Not. Ever. Lift. Over. 10 pounds. Your fistula can rupture and you can bleed to death in less than 10 minutes.” — As per my nephrologist. Ask your surgeon to see if I’m right, and ask your nephrologist too. That’s what I was told.

There’s a reason arteries are deep and veins are shallow. They just dug into your arm and brought your artery close to the surface and attached it via a graft up to a vein to get really fast, strong blood flow close to the surface. If your arm gets cut there and starts pumping blood in time to your heartbeat, you must call for help to take you to hospital immediately or it can be fatal.

Be careful a purse strap doesn’t sag off your shoulder and get twisted and restrict blood flow.

Nephrologists and dialysis nurses and technicians call it a fistula. Other doctors almost always call it a “shunt.”

No blood draws or blood pressures on that arm, ever.

If you end up getting a transplant, you may be able to ask that the fistula is “reversed”. You’ll have to wait a year to be sure the transplant will take, usually. My fistula spontaneously clotted off after not being used for four months after I got my transplant. It now can never be used again.

I wish you the best of luck. Dialysis isn’t something anyone wants, but it is life support.

Keep in mind dialysis only replaces 10% of what healthy kidneys do.

[jodaer in reply to ShyeLoverDoctor]

I've heard of some of that info but nothing about bleeding out. Thanks for that. Glad you got your transplant but I'm not going that route.

[ShyeLoverDoctor in reply to jodaer]

Transplant is not for everyone. I think it’s quite quite rare to bleed out and die that way, but it does happen once in a great while, and you just need to be aware of that. It’s one thing you should mention to the people you live with, to take any bleeding very seriously.

If you plan to drive yourself to and from dialysis as some do (I did), you can get a small fabric sign that has Velcro around for the seatbelt it that says “Dialysis patient” in case you are in a car accident. They don’t release you to go home after treatment until your blood pressure is good, but I’ve still felt a bit woozy sometimes. One of my friends would pull over and nap sometimes on the way home he felt so tired.

Or maybe you plan to dialyze at home, I can’t recall if you said.

Another thing I’d add - if you end up admitted to a hospital for some reason, be sure to protect your fistula from blood draws! I ask for a sign to be put on my door or by my bed to remind them. I still, despite that, had a phlebotomist come in at 5 am, ignoring the sign, and try to take blood there. You can get a rubber bracelet to wear that says “No BP No Needles” but they can ignore that too. What I do now, when I have to go to Emergency, I take a sharpie / magic marker and write “fistula” on my arm so they can’t miss it or the words NO BP etc. Your fistula is your lifeline, it really is. You must protect it. If it gets compromised, you’ll have to do dialysis with a chest catheter until you can have a new one surgically put in. Chest catheters carry the risk of deadly infections, make it tricky to shower to avoid those infections, and you also do not always get as good filtering as with a fistula, because the blood flow can be slower.

[jodaer]

Thanks for the additional info. It's very helpful. I'm almost 82 which is why I'm not going the transplant route. I was just thinking that I should do something about getting a bracelet or something to let people know I have a fistula.

[ShyeLoverDoctor in reply to jodaer]

I did buy a medic alert bracelet actually.

[jodaer in reply to ShyeLoverDoctor]

I've been thinking about that. Where did you get yours?

[barbara55109 in reply to jodaer]

I found an inexpensive engraved one on Amazon. Personalized and less than$20. I like it better than the generic rubber bracelets. I was having so many diabetic lows and was afraid of passing out. So my husband's number is on back. ICE it's called.

[jodaer in reply to barbara55109]

Thanks, I'll check that out

[ShyeLoverDoctor in reply to jodaer]

MedicAlert.org You will have patient # on it that they get see all your medical issues and medicines. Some now have q QR code.

[Jk2023 in reply to jodaer]

This is a definite must in my opinion a lot of nurses don't bother to check when my mam first got her fistula she was admitted to hospital and we were dashing around that much we forgot her bracelet luckily I was their when the nurse was about to take her blood pressure from her fistula arm even though I told her multiple times and I wrote on her hospital bracelet in bright red that she had a av fistula right arm

[anemraz]

My mom's fistula was done under local anesthesia. Unfortunately it didn't work. Her veins are too narrow and graft has its own set of complications. We are stuck with a catheter.

[jodaer in reply to anemraz]

I'm sorry to hear that. It sounds like she is doing well though

[Phillip46]

You really seem surprised and excited about it. I am awaiting the day when my nephrologist tells me I need to go get the AV fistula done. How does it feel? Any discomfort? Or any other problems? TIA and hope all goes well with you. Regards, Howard

[jodaer in reply to Phillip46]

Thanks. I hope you never have to hear your Neph tell you to get one. It feels kind of weird. It also hard to get used to not using that arm. I go back next week for preop so I'll know then what I can or can't do.

[ShyeLoverDoctor in reply to Phillip46]

There is always a fairly large scar. Depending on your veins and the skill of your surgeon, the scars can be terrible The more you use a fistula for dialysis, the more it will bulge out. Your arm will always look deformed, perhaps only slightly, sometimes hugely. You can often see the blood throbbing under the surface. There’s nothing benign about them, but they’re your life line. I gave up wearing short sleeves.. Go on the internet and google some stock images so you’re not shocked. Some are worse than others.

[Phillip46 in reply to ShyeLoverDoctor]

Sounds peachy. And hope my nephrologist waits longer for ordering the fistula. And I understand it makes things easier doing it before the necessity of dialysis. How does it feel after the initial surgery? Can you use the arm normally after a reasonable post op period? How does it feel after dialysis? Does your arm for the most part feel normal afterwards? TIA. And hope all goes well with you. Regards

[ShyeLoverDoctor in reply to Phillip46]

I know it sounds rough but I am here to be honest. Transplant is not for everyone but it is my preferred choice. Once your GFR is 20, YOU ARE ELIGIBLE. You do not have to wait to be on dialysis to get listed for transplant.

Yes I was able to use my arm normally post op except - I’m NOT supposed to lift more than 10 pounds EVER. My doctor said I could gradually work up to a bit more. One time I forgot this and tried to pick up a 25 pound box of kitty litter. Immediately I felt a hot surge along my arm and it was very scary. Went away after about 10 minutes. I’ve just accepted I am semi-disabled and have to ask for help.

After dialysis my arm felt OK, except remember they stick two needles in your fistula, one arterial, one venous. After you are done with the machine, you have to hold pressure over those punctures for 10 minutes. They give you heprin during the procedure which your body does clear pretty quickly. Then you leave the dialysis center with a bulky dressing taped to your arm which you should leave on for four hours. If you take it off early, you risk bleeding again. Do not leave it longer than that. Too much pressure can damage the fistula.

A fistula takes 3 months to heal. When the doctor says it’s time, pay attention and do not be in denial. If you delay, you will have to have a catheter inserted in your chest and you do not want that. It carries a risk of deadly infection. You don’t get as good filtering as with a fistula, you might have to be on the machine longer. It makes it very difficult to shower. Forget baths or swimming.

A PD catheter takes one month to heal.

Do your research and decide if you want to do PD, in center dialysis, or at home dialysis. They both have advantages and disadvantages. PD is gentler on your body and most people feel better on it, but you have to do it every single night. You have a huge amount of supplies and you have to keep one room sterile - no pets allowed inside, don’t sit under an air vent. Some people find it uncomfortable, or even painful that they give up on it. However PD does let you keep some of your kidney function longer.

I didn’t want to deal with something sticking out of my abdomen, have a lot of supplies, or worry about infection. I went in-center 3 days a week and then went back to my life, I didn’t have reminders at home with supplies, machines, etc.

Decide now which treatment you want. Ask questions, Read up on it. That way if you have to go on dialysis, you can prepare ahead of time. Lots of people “crash” into dialysis and have to start with a catheter.

Thank you, I’m doing well. One year four months two weeks post transplant. I’ve had no rejection. I only spent 11 months 3 weeks on dialysis because I went to a transplant center with a short wait time. I am blood type B but took a blood type A kidney. Riskier but shortened my wait time. My creatinine is 0.95 my GFR is 74.

However you do not get a transplant and just ride off into the sunset, for almost everyone - a couple people I know got lucky - the drugs are very hard. Lots of side effects and picking which drugs you can tolerate. Being re-hospitalized is common shortly after transplant is common, and it happened to me, the next week. , I’ve been hospitalized four times since. First year is rough. The idea that I would suddenly be “full of energy!” post transplant did not materialize. Transplant drugs increase your risk of cancer !

HOWEVER - transplant beats dialysis any day of the week. I have zero regrets. I’m incredibly grateful to whoever donated their kidney after they died. Every single one of my family (3 siblings) and 12 cousins and spouses and my friend of 38 years all refused.

[Joycepop]

Hope all goes smoothly for you.Had fistula done august 24,no pain or discomfort.I am ESRD and have not started dialysis yet.best wishes to you

[jodaer in reply to Joycepop]

Thanks best wishes to you. Glad yours went good too.

[barbara55109]

I too have a brachial one and was under a general. I cannot imagine being awake for surgery. My 10 on pain was having a Hickman cath put in my chest, awake. Much worse than my awful, pitocian fueled childbirth experience. Best wishes!

[jodaer]

I had a previous fistula scheduled that didn't happen, but they were going to block my arm then just sedate me. Not sure what hickman is but it sounds bad.

[Sapphire187]

I had fistula surgery in July and at my post-op appointment six weeks later was told it was occluded and wasn’t viable. I had surgery for a graft three weeks ago and am hoping this one works out. Good luck with your fistula.

[jodaer in reply to Sapphire187]

I'm sorry to hear that. I hope the graft works for you. I go back for my post op tomorrow.

[Sapphire187 in reply to jodaer]

How did your post-op go?

[jodaer in reply to Sapphire187]

Good. He said the thrill was excellent. The incision is a bit swollen and might seep a bit but not to worry. I go back in 6 weeks for post post op.

[Sapphire187 in reply to jodaer]

Glad to hear it went well!