Pre-Dialysis

[LaPorte]

I am glad I found this site. I am pre-dialysis. I was diagnose with CKD early this year. I had my AV Fistula in June 2017, 6 weeks later,  my surgeon tells me that my vein is not large enough and I will need two veins tied off to force blood through the one vein to increase its size. That was 4 weeks ago. That's where I am now waiting for my vein to get large enough to maybe start Dialysis. I have a doctors appointment in two weeks to check the vein. I am hopping to defer the start of Dialysis for as long as possible. I don't understand why some people with very low GFR numbers need to start Dialysis right away and others can go for months without starting Dialysis. I am not seeing any CKD symptoms or feeling bad. My problem right now is my mind. I don't understand what's going on. My GRF is 10 and has been for a few months. My understanding is if your GFR is below 15 your suppose to be on Dialysis. I am told don't worry about it if you have an emergency we can install two Chat in your neck and start Dialysis. I don't want to have Chat in my neck. So I worry about going anywhere because what if. To add to my problems I have and have had Celiac Disease for many years so my diet has been restricted because of that, now with CKD, it's even more restricted. I need to come up with a tasty sauce to pour over wood chips, no Gluten, no potassium and low fat.     

[cassandra]

Hi are you doing squeegy ball exercises with your fistula arm? And I'm going to look up how much potassium is in wood chips
  .   There's probably phosphates in it too.

Love, Cas

[LaPorte]

Hi are you doing squeegy ball exercises with your fistula arm? And I'm going to look up how much potassium is in wood chips
  .   There's probably phosphates in it too.

Love, Cas

No one has suggested that I squeeze a ball, not my doctor or the surgeon.  Does picking up a beer bottle and holding it on a angle just higher than you lips count.

[iolaire]

Hi are you doing squeegy ball exercises with your fistula arm? And I'm going to look up how much potassium is in wood chips
  .   There's probably phosphates in it too.

Love, Cas

No one has suggested that I squeeze a ball, not my doctor or the surgeon.  Does picking up a beer bottle and holding it on a angle just higher than you lips count.

Its more about increasing blood flow to that area, so more like flexing your arm. 

You can read about it here:
https://www.pittsburgh.va.gov/dialysis/dialysis_fistula_care.asp

But this PDF in exercise #3 for Upper Arm Fistula talks about lifting weights so maybe if you upgrade your beer to a bigger bottle you might be good :-)
http://www.bcrenalagency.ca/resource-gallery/Documents/Vascular%20Access%20for%20Hemodialysis-%20Exercises%20for%20your%20Fistula_2.pdf

I would worry a good bit about not being told about this type of exercise its fairly standard for fistula placements.  I had very strong veins to work with and was still told to do it by everyone I encounter on my care team.  Some people to this day still tell me to do it even with aneurysms that look to be half to an inch round!

Also as to when to start dialysis many people, me included, are told you will know its time to start based on how you feel.  I guess what I'm suggesting is to understand you might be able to wait to start dialysis until you are impacted by the symptoms of kidney failure or start it based on your lab numbers.  This guide seems to outline the benefits and risks of waiting to start dialysis.
http://www.homedialysis.org/life-at-home/articles/when-to-start-dialysis

[LaPorte]

Hi are you doing squeegy ball exercises with your fistula arm? And I'm going to look up how much potassium is in wood chips
  .   There's probably phosphates in it too.

Love, Cas

No one has suggested that I squeeze a ball, not my doctor or the surgeon.  Does picking up a beer bottle and holding it on a angle just higher than you lips count.

Its more about increasing blood flow to that area, so more like flexing your arm. 



You can read about it here:
https://www.pittsburgh.va.gov/dialysis/dialysis_fistula_care.asp

But this PDF in exercise #3 for Upper Arm Fistula talks about lifting weights so maybe if you upgrade your beer to a bigger bottle you might be good :-)
http://www.bcrenalagency.ca/resource-gallery/Documents/Vascular%20Access%20for%20Hemodialysis-%20Exercises%20for%20your%20Fistula_2.pdf

I would worry a good bit about not being told about this type of exercise its fairly standard for fistula placements.  I had very strong veins to work with and was still told to do it by everyone I encounter on my care team.  Some people to this day still tell me to do it even with aneurysms that look to be half to an inch round!

Also as to when to start dialysis many people, me included, are told you will know its time to start based on how you feel.  I guess what I'm suggesting is to understand you might be able to wait to start dialysis until you are impacted by the symptoms of kidney failure or start it based on your lab numbers.  This guide seems to outline the benefits and risks of waiting to start dialysis.
http://www.homedialysis.org/life-at-home/articles/when-to-start-dialysis

iolaire thank you for the information contained in the link to HomeDialysis. I have been asking the question for the past 2 months why I haven't started start Dialysis with my GFR number below 15 as the information given to me by my doctor indicated. I asked this question of my Doctor my surgeon and nurses in the hospital not a single person told me what your link said. This is making me upset. There is a paragraph that mentions a possible link between Celiac Disease and CKD. Thank you again. At least I have a better understanding why. 

[iolaire]

I'm glad you found it useful.  Self education will allow you to know what to ask about and hopefully your care team will have good responses to specific questions.

I still urinated for the full 3.5 years I was on dialysis and probably had some residual function. I think that helps make the transition easier because it was a more gentle transition to needing to control phosphorus and the like. But as I may have said before starting dialysis and getting iv meds like Erythropoietin (Epo) did have a huge improvement on my energy level.

[kickingandscreaming]

GFR number isn't a reliable indicator of when you need to start dialysis.  I was down to 6% and I felt better than I do today--on dialysis.  But there did come a time when the time was right.  In my case, it was forced upon me with a case of pneumonia that landed me in the hospital with legs the size of tree trunks and just as hard--filled with 12 kg excess fluid.  So that launched me on my career of dialysis.   But at 6% everyone was waiting for me to crash.  I finally did, but it took a while.  Perhaps that will be true of you too.