And another question, this for the people who have the AV fistula but are not yet on dialysis or had it for a while before dialysis.

[jodaer]

My neph, at my last visit, suggested I get the AV fistula right away. She said it could take a year to heal. My eGFR is at 30 and I think she is rushing me to get it. I'm 80 and maybe she is thinking that I'm going to go into an emergency situation and then the catheter thingy they use then. I would like to know what others think. I'm thinking that I might not even go that route so don't want to go through it all. I thought I might tell her when eGFR gets to 20 we can discuss it again. From what I've read the older you are the harder it all is. Thanks.

[bumblebee_tuna]

It's probably too early but it all depends on how quickly your gfr is going down. If you feel like your health is degrading you might want to get it done preemptively but I think you are looking at a least a few more years.

[Bassetmommer NKF Ambassador]

What Bubblebee said is right. If you are declining fast, the GFR is going down, then I can understand the need. But if not, in my not medical opinion, too soon.

However, if you do go that route, it is truly no big deal. I have mine done and truthfully, piece of cake. There were two days with no arm use. You really learn how much you use your non-dominant arm. Then slowly started to use it more. No carrying anything at all, them some lighter stuff and now I am careful not to life anything over 10 pounds or less with that arm. However, I can pick up my doggie because I use both arms. She is 20 pounds. I also started doing ball exercises after two weeks. The pain was really nothing. The scar is minimal but the fistula is bumpy.

Saw the surgeon last week and have full clearance to go back to water aerobics, carrying things and being mindful of lifting. He said the fistula is perfect and growing nicely. He and my Nephrologist said it could be used within 6 weeks, but better two months or more. Not a year. My plan is to wait as long as I can. I feel fine, no symptoms at all which is baffling everyone. GFR is around 13.

[TDPowers in reply to Bassetmommer]

Hi, I’ve been keeping up with your post and you are so positive. I was wondering if you are going to do hemodialysis at home. We’re trying to decide whether to do hemodialysis or peritoneal at home. We have a swimming pool and exercise in it but was concerned the nephrologist said we could as long as it wasn’t a public pool but worried about infection. Do you know if both treatments about the same on your health. You are very knowledgeable and give encouragement and I thank you and wish you the best

[Bassetmommer NKF Ambassador in reply to TDPowers]

You are very sweet. Thanks for the compliments. As to swimming...... I LOVE to swim. I do a water aerobics class in a current channel every Tuesday and Thursday. I love the class and it is the best exercise I can do. I have bad arthritis. When I had to decide which way to go, PD or HD, it was an easy decision. HD. The reason I chose this was because I wanted to continue with swimming. You can swim with PD, but the restrictions are much more, like a private pool. NO lakes and community pools can be a no no. And definitely not a current channel which is very strong. I did get clearance from the surgeon to return to class tomorrow after a month off of healing my fistula. He also said that he has no worries with me continuing even when I start dialysis. His only concern was to think about getting a watertight covering when the fistula gets uses a lot and has been poked a lot.

The choice for me is Home hemo and I am being evaluated on Wednesday with a in home evaluation. If I have to do dialysis, I want it on my terms, when I can plan my day around living and not dialysis.

Best to you too.

[TDPowers in reply to Bassetmommer]

Thank you for responding to my questions I appreciate your input Can I ask where your fistula is located I’ve read where there is two different locations on your arm it can be put. Thank you again

[Bassetmommer NKF Ambassador in reply to TDPowers]

Sure, ask me anything.... the surgery incision is right at the elbow. It is healing and almost unnoticeable other than a line. The fistula is up about two inches in the bicep. I was lucky to have this type of fistula. They were not certain they could do it. What they thought was going to happen would be a long incision up the inside of the arm and then the fistula would be longer and it would have been two surgeries.

This is what they did: they connected the left cephalic vein to the left brachial artery. Having this done before I needed it was the right thing to do.

[TDPowers in reply to Bassetmommer]

Thank you so much for sharing I wish you the best

[bestmom24 in reply to TDPowers]

I too am think about home hemo, but I live alone and don't think that is a wise move right know. I also have a swimming pool and I use a shower shied over my port to swim almost every day. I do not want to go through an unnecessary surgery, nor do I want the ugy after effects of the fistula. I am having ahard time emotionally with dialysis. I have been doing this for 2 years and 10 months. The center keeps trying to scare me into getting a fistula, but my transplant nurse (I am on 2 transplant lists) agrees with me. Being on this site has helped me stay a bit more positive. Thank you allo.

[bumblebee_tuna in reply to bestmom24]

It's prudent to get a backup to PD for an unlikely event of infection or anything else that can go wrong. If you are not using the fistula it's hardly noticeable but it does take a little getting use to. I too was resisting getting one but a plus for getting one - if you get a transplant you can remove the catheter during the operation and rely on the fistula as backup.

[jodaer]

Thanks, I think she is jumping the gun too. My eGFR had been running low 40 to high 30. Then in January she had them do the "new" more accurate test and it dropped by about 10. I think she saw the drop this last time and forgot why/how it got there. I go back and see her in mid-Sep, but I go this week for my between appointments lab work. Unless I do a big drop, I think i might get out without having to have it done.

[CuriousCKD]

I wish I could say something helpful. In my own opinion, if my GFR were at 20, I would be inclined to wait. It also depends on how you’re feeling. ❤️

[PeaB4YouGo]

I, too, have had an AV fistula created in my left arm. My Vascular surgeon saw the site about three weeks later and she was amazed at the progress. When she asked how often I exercised my arm, I had to tell her; every time I picked up my guitar. My nephrologist is very happy with the results. I am not on dialysis at the moment, but they're saying that I will need it within the next few months.

BTW, and this should matter, I have a brachiocephalic fistula. Basically, it means that the fistula is at my elbow, and not on/near my wrist (radiocephalic).

[jodaer]

Thanks for the input

[barbara55109]

I'm 60 and on the transplant wait list. I've had my unused fistula for two years. They couldn't make me an AV one. Mine is in my upper arm - Brachial Cephalic. My GFR has stayed in the low 20s. The dr thought I'd be on dialysis by now. IF you chose dialysis getting a fistula early is the best option.

[Hawk12]

I’m 71. I got the fistula (at the wrist) prior to my transplant and, fortunately, never had to use it. I DID have a stricture (narrowing) of the vein after the surgery, and had to have another surgery, and then there was still a question of some residual narrowing. So even though I ended up not needing mine, I agree with barbara55109, and my advice would be to get it early! Good luck to you jodaer!

[Darlenia]

Only you can really make that decision. One usually knows its time when other things start to happen like blood pressure relentlessly rising, more swelling in the body, appetite and digestion changing, sleep pattern disruptions, etc. You're very aware of yourself which means a lot - I suspect you'll know when you've reached that crossroad and decide the path to take. Sometimes making no decision is a decision in itself. My hubby and I are seniors and often think about the future, too. You've done well to make it into your 80s, Jodaer! Much respect. Hugs!

[jodaer in reply to Darlenia]

I really think I can make it a few more years. I'm already past my use by date so any time is a gift. Mostly, kidney wise anyway, I feel pretty good.

[Marvin8]

If your eGFR wasn't 40 or 50 last year, I'd get a new nephrologist.

[jodaer in reply to Marvin8]

Marvin I don't understand this

[Marvin8 in reply to jodaer]

It means that unless your eGFR has been rapidly declining over the past year, I can't imagine ANY nephrologist giving the go ahead for placing a fistula at your eGFR level. Similar to what others have said here.

[jodaer]

Got it. thanks. Sometimes I just don't get stuff. I agree. Its not gone down, other than the different test but I think she forgot that. She's really good most of the time. I'm thinking she is not used to older patients. That's why I asked, wanted to get other opinions before I talk to her again.