GFR has been 14-16 for over a year. I get very tired. Everything is an effort. Bad leg cramps (due to lack of potassium and calcium) but….I am still able to play a little golf, swim and live my life. Will fight the dialysis as long as i possibly can 😉
GFR has been 14-16 for over a year. I get very tired. Everything is an effort. Bad leg cramps (due to lack of potassium and calcium) but….I am still able to play a little golf, swim and live my life. Will fight the dialysis as long as i possibly can 😉
Does anyone get excruciating itching on their body? There is no rash. I have suffered with this for over 7 years. I roll Bio Freeze on the area but the relief doesn't last long.
My understanding is that insurance doesn’t coverCystatin C tests so most Drs don’t order it. Because it’s not usually the test ordered, insurance doesn’t cover it, despite it being a more relevant reliable way to track kidney function. Catch 22. I have read though that were it to be ordered more often, labs could quickly upscale to process quickly and this would bring costs down likely resulting in it then being covered by insurance. I plan to request it in my next ordered labs.
GFR has been 14-16 for over a year. I get very tired. Everything is an effort. Bad leg cramps (due to lack of potassium and calcium) but….I am still able to play a little golf, swim and live my life. Will fight the dialysis as long as i possibly can 😉
I watched a YouTube video posted by someone using home dialysis twice a day. I couldn't believe what she has to go through. For sure, I would not do it at home besides, I live alone. No help if I needed it.
@flow "Some" insurance companies do not cover the Cystatin C lab test. Medicare does cover it so for those at or over 65, it is usually covered. I understand that in Canada it is not covered. Outside of nephrology, many doctors including PCPs are unaware of Cystatin C which is typically why it is not used that much. My own very sharp endocrinologist up until a year ago did not know. The forerunner to this lab test is the creatinine eGFR and has been around for many many years. BUT you are quite right when you say it is a very reliable kidney function test.
@mamamusic I can’t answer that without adding some history. My father-in-law had end stage renal disease. He said “dialysis is no way to live”. I adopted this sentiment and told my nephrologist “I would rather die than do dialysis”. That was in 2008 when I first met my nephrologist.
BUT I am also a Christian believer. This means I’ve accepted Jesus Christ as my lord and savior for eternity and have theoretically put my life in God’s hands. It occurred to me that if I’m serious about this, who am I to say what I will and won’t do? It is possible that dialysis could be a part of God’s plan for my life. My job is to take care of myself the best that I can.
I will do dialysis if I need to. I am also looking into living kidney donation transplant. I’ve been looking for a living kidney donor since 2011. I believe that will happen if it is meant to be.
I’ve been through pre-transplant evaluation and have been approved and accepted for kidney transplant. I am inactively listed at Mayo. It is inactive because my GFR is currently too good for active listing, Thank God!
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I am 77 with a GFR of 16 (up from 8). Numbers fairly stable so am avoiding dialysis for now 👍
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2 ReactionsDo your numbers go up and down often. What symptoms are you dealing with?
GFR has been 14-16 for over a year. I get very tired. Everything is an effort. Bad leg cramps (due to lack of potassium and calcium) but….I am still able to play a little golf, swim and live my life. Will fight the dialysis as long as i possibly can 😉
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3 ReactionsI also get excruciating muscle cramps. I get some relief from rubbing Bio Freeze on the cramp.
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2 ReactionsDoes anyone get excruciating itching on their body? There is no rash. I have suffered with this for over 7 years. I roll Bio Freeze on the area but the relief doesn't last long.
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Hug
1 ReactionMy understanding is that insurance doesn’t coverCystatin C tests so most Drs don’t order it. Because it’s not usually the test ordered, insurance doesn’t cover it, despite it being a more relevant reliable way to track kidney function. Catch 22. I have read though that were it to be ordered more often, labs could quickly upscale to process quickly and this would bring costs down likely resulting in it then being covered by insurance. I plan to request it in my next ordered labs.
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2 ReactionsI have an appointment in a couple of days. I'm sure he will be talking about it.
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1 ReactionI watched a YouTube video posted by someone using home dialysis twice a day. I couldn't believe what she has to go through. For sure, I would not do it at home besides, I live alone. No help if I needed it.
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1 Reaction@flow "Some" insurance companies do not cover the Cystatin C lab test. Medicare does cover it so for those at or over 65, it is usually covered. I understand that in Canada it is not covered. Outside of nephrology, many doctors including PCPs are unaware of Cystatin C which is typically why it is not used that much. My own very sharp endocrinologist up until a year ago did not know. The forerunner to this lab test is the creatinine eGFR and has been around for many many years. BUT you are quite right when you say it is a very reliable kidney function test.
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2 Reactions@mamamusic I can’t answer that without adding some history. My father-in-law had end stage renal disease. He said “dialysis is no way to live”. I adopted this sentiment and told my nephrologist “I would rather die than do dialysis”. That was in 2008 when I first met my nephrologist.
BUT I am also a Christian believer. This means I’ve accepted Jesus Christ as my lord and savior for eternity and have theoretically put my life in God’s hands. It occurred to me that if I’m serious about this, who am I to say what I will and won’t do? It is possible that dialysis could be a part of God’s plan for my life. My job is to take care of myself the best that I can.
I will do dialysis if I need to. I am also looking into living kidney donation transplant. I’ve been looking for a living kidney donor since 2011. I believe that will happen if it is meant to be.
I’ve been through pre-transplant evaluation and have been approved and accepted for kidney transplant. I am inactively listed at Mayo. It is inactive because my GFR is currently too good for active listing, Thank God!
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