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[GopPine76]

Hello,  I am not doing dialysis but I am in fourth stage.  Last year they put in a failed dysfunction av Fistula.  It has been a year now and the stupid thing is giving me issues.   I have pain and discomfort in my arm is swollen and the pain shoots up to my shoulder.  I cannot golf or bowl.  Right now I am on prednisones and I hate that stuff.  It makes me feel better but it’s short term and I’m getting off on Tuesday.  I see the vascular surgeon on Tuesday and I want him to do mapping of the veins to see what is going on inside my arm and why the stupid thing is pulsing & thrilling now  because I guess it’s matured.  Vascular surgeon will tell me on Tuesday.  I don’t know what he’s going to say.  If it’s still not working properly then I have to get a tube inserted into my arm and three days later after start dialysis but I’m so afraid.  I have very good labs three months ago and I go this Thursday for more labs and then  kidney doctor and hopefully hoping that by eating plant-based foods I can avoid dialysis.

[Michael Murphy]

I am sorry to hear you are having problems with your fistula, hopefully your doctors will get it sorted out.  The thrill is normal, so is hearIng the ocean if it’s under your pillow. My fistula was created in 2011 2 years before I started Dialysys. The first year it required 2 angioplasties to fix narrowing.  Since then it’s been good.  I lasted 2 years beyond the time my doctor told me it was time by modifying my diet.  Less protein and less processed food.  The 2 years was a gift.  However I was careful to watch for signs of CKD symptoms which would indicate it was time to start.  During the 2 years my doctor was telling me every month it was time to start, but I felt good so I refused.  Eventually I started showing signs of ESRD stage 5 and surprised my doctor with it was time to start..
What I believe is that the lab numbers are great in predicting the eventual need for dialysis but not so good at predicting when.  How you feel is the best indication of when to start, as long as you are honest about your symptoms and don’t push it till you are hospitalized.

[MooseMom]

Hello, GopPine.  I'm being very selfish when I tell you that I was glad to read about your fistula because I felt the same way about mine.

I hated, hated, hated it.  Every single moment for 4 years, it was causing me grief.  And there was nothing wrong with it. 

Many times I'd get those shooting pains like you describe.  It didn't keep me from doing anything, but it was always uncomfortable.

Ends up I didn't need it.  I was transplanted before I had to finally start dialysis, but two years afterwards, my tx neph noticed a possible aneurysm in my neck right on top of my collarbone.

I had to go see a vascular surgeon who ended up ligating it before the damn thing started growing up into my head.  It wasn't an aneurysm after all, rather, it was my fistula that had continued "maturing".  How gross is that?

And do you know what?  Whenever I get really tense or anxious about something, the blood vessels in that arm will start to ache.

So, please come back and tell us what you find out on Tuesday.  I hope the vascular surgeon will tell you that everything is OK, after all.

[LorinnPKD]

Hey, there! Welcome!

Stage 4 is especially rough because you dread all the stuff that's ahead of you.  I was so frightened of dialysis, and I felt so awful all the time, and I worried about whether my life would be worth living so I put it off as long as I could, until I was so weak I could barely walk across the street!  After the first day on dialysis (and I was trembling like a leaf!) and experiencing it myself, things just sort of clicked in place and I wasn't scared anymore.  My quality of life is better on dialysis than it was in the months before.

My fistula went through all these different stages -- at first it vibrated so hard that my dog would glare at me from my lap.  When I sat my arm down on a table, the whole table would vibrate.  It was like there was an angry, electrified mama hornet in my arm all the time! I've had the shooting pains from time to time, but it's nothing like what you've been experiencing so I'm glad you're getting things checked out.

Hoping all goes well for you this week and you get the answers you need.

[cassandra]

Welcome to the site GopPine76


   


Take care, Cas

[kickingandscreaming]

I'm sorry to hear about your fistula issues. Sounds nasty. 

It makes me very glad that I don't do Hemo and don't have a fistula.  Have you considered skipping the whole Hemo business and going with Peritoneal Dialysis?  No fistula required, just a catheter.  And no needles the size of railroad cars.  And it's much easier on the body.  Have you been offered PD as a possibility?  If not, perhaps you could lobby for it.  In any case, I hope you get good/useful news on Tuesday.

[Paul]

 

Hello GopPine76, welcome to the site.

Sorry to hear about the problems you have had with your fistula. The one thing I can tell you from experience is that there is no need to be afraid. I know from experience that saying "Don't be afraid" is as useless as telling someone to flap their arms and fly to the moon, but really, you have no need to be afraid. If a coward like me can survive this, then anyone can.

[Charlie B53]

First of all, Welcome to IHD.  Now with that out of the way, it is perfectly Normal for most people to be afraid of the unknown.  Being told that your kidneys are failing and you will very soon need to be doing Dialysis is a very very scary thing.  If someone wasn't scared, they couldn't be anywhere near 'Normal'.

Qwap happens.  Sadly that is almost too 'Normal'.  Surgery and the development of a new Fistula isn't an exact science.  Pretty much nothing involvint the human body is.  Not everyone is the same.  What may work perfectly fine for many peolpe may not work at all for some.  Sadly, you are one of the last group as your fistula is concerned.  Perfection takes time, and for some, work.  Has your Surgeon talked to you about 'exercising' your arm?  Given one of those 'squeezy' things?  That is one of the few exercises that do not over work the arm yet is enough to cause the body to increase the blood flow enough to cause the fistula to 'grow' the little bit needed to get proper flow.  But this again is going to take some time, and effort.  Many of us won't remember, or are otherwise unwilling to expend the effort.

Talk to your Dr's, ask them if there is anything you should be doing to help your arm heal better.

Take Care,

Charlie B53