I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: BeachLover on July 25, 2009, 07:00:55 PM
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My hemocrit keeps going down. Last month it was at 27.4 and this month 24.2 Doctor is concerned. But i just had surgery for fistula. Couldn't that be it? Loss of blood?
I am now taking my iron pills again. Hate them because they upset stomach.
I'm just wondering, what will they do if I continue to go down. I am on 330 of Aranesp once a month. I was doing fine on 100 twice a month for a long time but suppose kidneys are worse. I am at 3,8 creatinine.
Getting nervous.
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Can you do Aranesp weekly?
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Can you do Aranesp weekly?
They are going to check me bi weekly for awhile. I just wonder how much aranesp it would be safe to take.I already had 330 last week.
I guess I will do whatever the doc says. I feel so crummy, no energy or life to me at all.
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Surgery can lower your hematocrit, even fistula surgery. It's a trauma to the body.
As far as iron, ask your nephrologist if you could receive I.V. Iron instead of oral iron.
And make sure you are taking appropriate amounts of folic acid and vitamin B12.
8)
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Surgery can lower your hematocrit, even fistula surgery. It's a trauma to the body.
As far as iron, ask your nephrologist if you could receive I.V. Iron instead of oral iron.
And make sure you are taking appropriate amounts of folic acid and vitamin B12.
8)
Another nutrient that helps promote healing after surgery is zinc.
Also, my nutritionist has informed me that many hemodialysis patients have been found to be deficient in carnitine, because much of its produced by the kidneys, and because it's a relatively lightweight molecule (161 daltons) and unbound to proteins, so dialyzers just suck it right out of the bloodstream easily. Recently, carnitine deficiency has been found to contribute to anemia; hemodialysis patients who take carnitine supplements (after dialysis, of course) have been able to make do with lower doses of Aranesp. So my nutritionist and I have agreed to give carnitine supplementation a try.
Ask your nutritionist about this.
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So much to learn..... I found this web site and thought it might be usefull.
http://lpi.oregonstate.edu/infocenter/othernuts/carnitine/
I was not aware of so many problems with dialysis and nutrient loss..... I am amazed.... Now I wish I was a bio-chemist...... but Iam not just a old lab rat in Food Science.....
thx for the information.....
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So much to learn..... I found this web site and thought it might be usefull.
http://lpi.oregonstate.edu/infocenter/othernuts/carnitine/
I was not aware of so many problems with dialysis and nutrient loss..... I am amazed.... Now I wish I was a bio-chemist...... but I am not just a old lab rat in Food Science.....
thx for the information.....
You're welcome.
I'm not even a lab rat in Food Science. I was an engineer before I got sick. But I was always a quick learner.
Healthy kidneys can selectively filter out those small molecules that are toxic (like urea), while retaining those small molecules that are nutritious (like carnitine). Dialysis hasn't progressed to the point that it can do that; it just filters out nearly all the small molecules (and even many middle-weight molecules), even those that are nutritious. And so, scientists keep finding more and more nutrients that we ESRD patients have to take, in order to make up for the losses due to dialysis.
Currently, at the advice of my nutritionist, I'm taking a renal multivitamin, oral vitamin D, fish oil (omega-3 fatty acids), and carnitine. Whew!
I'm having discussions with my nutritionist about antioxidants too. There is now evidence that another risk factor for heart disease in ESRD patients is oxidative stress. But there doesn't seem to be much known about the safety of powerful antioxidants for ESRD patients.
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There is a blood test to see if you are Carnitine deficient.
Medicare will reimburse I.V. L-Carnitine only under strict conditions:
Low response to ESAs (ie: Aranesp) or intradialytic hypotension.
http://carnitor.com/reimbursement_overview.html
People on dialysis need to be careful when it comes to taking over-the-counter vitamins such as vitamin C:
"Increased oxalate burden may occur in Stage 5 CKD patients, especially if they receive large amounts of ascorbic acid. This may be associated with marked deposition of calcium oxalate in soft tissues. Such deposition in the myocardium, or mitral and aortic valves, can cause cardiomyopathy and congestive heart failure, eventually leading to death. Since vitamin C is metabolized to oxalic acid, it is recommended that vitamin C intake in Stage 5 CKD patients be limited to the daily recommended dose."
http://74.125.95.132/u/kidney?q=cache:6wKpgNWlXggJ:www.kidney.org/professionals/KDOQI/guidelines_bone/background.htm+Vitamin+C&cd=9&hl=en&ct=clnk&gl=us&ie=UTF-8
There also has been concern expressed over the use of oral carnitine because it may produce toxic metabolites. IV Carnitine may be safer than oral versions for people on dialysis.
8)
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Before dialysis my mom would get an aranesp shot every two weeks. She would also get a vitamin B shot, and when needed a unit or two of iv iron. This went on for almost a year prior to dialysis.
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I went back to doctor after two weeks and they gave me another shot of 330. I had gone up one point to 25.7 so I guess that is good. But I was given 660 of aranesp within two weeks. Bad stomach upset. Is this safe to take so much in a short period of time?
My urine also is getting foul smelling. Very strong. Not on dialysis yet. Why would urine smell so bad?