Do you lift weights?tinkll1March 13 2005, 21:48:16 UTC
I went back to some of your earlier posts and noted that you are on a protein boost powder. Having been on HD for 4 years, it's a fairly safe bet that you'e not losing protein by the urinary route and probably make very little urine. No albumin is listed in your chemistries, and no KT/V. The creatinine is very high, but the post creatinine is very good. Your problem is probably your vascular access, and to make up for pain with blood flow, your blood flow is very, very low. The only way to compensate for this is a very efficient dialyser and more TIME on dialysis and that's why you are on such long hours.
There is various work going on, largely experimental, in daily dialysis. This would be about 2-2 1/2 hours per day, but might challenge your fistula. It would lower that pre-dialysis creatinine. It may not be feasible because it may not be compensated, or the units in your area may have little experience in this method. I have no direct experience in this method, but magic happened when I applied 3 hours 6 days a week to a woman who became pregnant on dialysis and led to a successful pregnancy.
What is your vascular access history and have you discussed alternatives with your vascular surgeon and nephrologist? Pain in a fistula, in my experience is uncommon, and this should be evaluated and you should understand your alternatives.
Larry, now, in Hawaii, and starting CME @ 7:30 AM, Monday
Re: Do you lift weights?( Part 1...)_apwil_March 14 2005, 05:48:07 UTC
To answer your question if i lift weights..no I dont. I've been on dialysis for 4 years, and I developed Neuropathy.I dont have diabetes, I dont have any nerve damage. I've had tests on which some residents have pinched me and all that..I feel everything. The only thing I feel is when Im sitting down for a long period of time, I get numbness all over my legs, and tingling sensations. Sometimes when its bad I feel my tongue gets numb. My doctor knows about this, and I've done cat scans, even an MRI. Everything is fine, its just a case of Neuropathy. I started jogging 2 miles 3 times a week. But now I rarely work out (lazy, and because of school). Im trying to get back in track, because I've noticed as long as I keep exercising my legs are fine. My nurse says I have to keep motivating, and keep that circulation moving. So it has paid off..a lot! Now I have been loosing weight because I really cant eat anything. Next week I'll be getting my braces, as of right now I have spacers. They hurt like hell, and its very hard to bite. So I really havent had a good meal. Last week I've noticed when Im done with treatment, my weight is under my dry weight. I've been sore, so its a lot harder for me to eat. I was thinking about talking to my doctor (this fri I have an appt), to tell her to put me on "boost pudding".Getting braces, your going to be sore, and they tell you you have to be on fluids. So boost pudding will be great. Yes you are correct, I do make a little urine. I still go to the bathroom when I have too. A few questions I wanted to ask you... - What does it mean when you say no albumin? - No KT/V? -I would also like to tell you that my dialyser is a 140. Do you think it should be a little more higher since im 150 and 4 hrs? I can talk to my doctor about it, lets see if shes happy w/ my chemisty. Also, I didnt say that our monthly labs in my unit is on Mondays. So yes my creatine will be high from a "free weekend". I do dialysis Mondays, Wednesdays, and Fridays. Should that make a difference, because it was 2 days without dialysis. We always do monthly labs on a monday, I dont know how other units do it. I belong to a Pedicatric unit by the way. - Even if they did change the days for monthly labs: for an example on wednesday or fridays is monthly labs. The creatine shouldnt be so high because its only 1 day between those days of not having dialysis. I hope you understand me..lol! -Also I did thought about dialysis dialysis. But my unit only had 5 machines!! I also have school, and I would never say I out school first..I put my health first because without health you got nothing! But all of the patients are in a schedule, and it will be very hard to have dialysis everyday, it will miss up everybodys schedule. My nurses dialyze 16 patients a day, so imagine they leave around 1 am sometimes! So it will be hard to try to compensate dialy dialysis. I tend to get sick, from back to back dialysis. When the hurricanes were coming here in florida last yr, man i felt horrible. Very nausea, and very dry from all the dialysis. Not a good feeling.
Re: Do you lift weights?( Part 2...)_apwil_March 14 2005, 05:52:05 UTC
To answer your question, i have had this fistula for a year now, I've never had any problems with it till my nurses started hitting new spots. It got to the point on which I couldnt stand the pain, and they sent me to the Vascular surgeon. He told me that he thinks my fistula is one of the best, very powerful, and wide. A lot of capacity of blood flowing in and out, and of course I will feel pain. So he wrote down orders to lower the speed, but with extra time. So i was booted up to 3 1/2 hrs. Now I kept feeling pain, so I finally did a fistulagram, and it turns out I didnt needed one. My veins are very weel good, no narrowness..nothing. Once again all the surgeons exmaine my arm, and told me its just a monster. I mean i have extremly good veins, and i need to be put on lower speed. Its too wide, too much blood. So thats why Im in pain..regardless. Belive me none of my nurses, doctors ever heard of a powerful fistula. They think its funny ebcause every fistula has its problems..clotting..or narrowing. But with me, its just the opposite. Its just too damn good..lol.So there the history of my fistula! -The pain is only when Im on the machine, the very second they take out the needles..Im fine. -Never had a blood clot..I only take aspirin once a day..81 mg and yes its enteric.
Thankyou for poating..this is the longest post Ive ever made!!lol April* Sorry for the mistakes on spelling.:o)
Re: Do you lift weights?( Part 2...)tinkll1March 15 2005, 00:01:13 UTC
I wonder if your fistula is too large. Does your pain go away when the fistula is not in use? Is the pain only there when you're being dialysed? This could mean that you have what is called a steal syndrome where the pain is coming from too much blood being diverted away from the muscles of the hand. This is a common enough occurrence that should be recognizeable to your surgeon if it's there. It's the kind of problem I turn over to the vascular surgeon for consultation and surgical correction if the surgeon feels that that is indicated.
You answered the question in the next sentence. You have a STEAL Syndrome and your surgeon should consider reducing the size of the fistula. I'm not a hundred per cent certain, but fairly confident so, if the surgeon disagrees, get a second surgical opinion. And please realize that no one can make a diagnosis like this over the internet with any level of certainty, and the last word is yours, and the doctors you choose to care for you.
Re: Do you lift weights?( Part 1...)tinkll1March 14 2005, 23:12:36 UTC
The lab results did not include a serum albumin. This is a basic nutrtional measure, and is a part of everyone's monthly chemistries. KT/V is an equation, like URR, that addresses the efficiency and effectiveness of dialysis. Certain units and physicians rely on one method or another, or both.
It's conventional to draw the pre-dialsysis chemistries over the longest times between dialyses, so MWF patients would have their monthly chemistries drawn on a Monday. The number is also a reflection of the adequacy of dialysis or the need for more. The reason I asked you about weight lifting, is that, for a woman, the creatinine of 15 is high. The more muscle a person has the higher their creatinine is, whatever their kidney function. The simple solution is to increase blood flow, which in your case, is half or less than the usual blood flow. The first question, then, is why is the blood flow so low, and your report of pain with dialysis suggests that the higher blood flows would cause you more pain, and that's why you're being run at so low a blood flow. All of this can be reviewed with your doctor and the dialysis nurses who know you best.
Because pediatric patients are smaller, the dialyzers used in a pediatric unit may have smaller size and less efficiency. You should be on the largest dialyzer you can safely use for it will give you the best dialysis in the shortest time.
Do you feel as though you can't keep your legs still?
Re: Do you lift weights?_apwil_March 15 2005, 02:29:03 UTC
I forgot to mention that my vascular surgeon did thought I had steal syndrome. I did an ultrasound...everythings fine. Theres nothing wrong, thats why Im just confused! Today it didnt hurt that much, but I have been giving some thought..I do think maybe my fistula is big. My vascular surgeon said if it still hurt to come by see him again, but to be honest one of his alternatives was to fix the fistula. I guess for it not to be so big, and wide? But then he said he doesnt want to do anything to it, because it wont be the same. I will talk to my nephrologist, i will ask her if she thinks a bigger dialyzer is the answer. I also have to ask her if shes happy with my labs, and will take it from there. Thanks for your help Larry, its advice thats really helping. I hope you dont mind, but can you explain to me what FSGS is really, its kinda hard to explain to some of my relatives who dont understand what it is. Thanks :)
P.S- yes i can feel my legs when they are still. Sometimes I wont, but i start shaking, and moving my muscles..and its gone. Do you know if Neuropathy goes away once I get a transplant?
Steal Syndrome and FSGStinkll1March 15 2005, 15:57:12 UTC
RE: Steal. Sounds like all the right things have been done. I have nothing more to add.
RE: Neuropathy and possible "Restless Legs Syndrome," ask your nephrologist if she thinks that might be a possibility, and if so, whether Neurontin (gabypentin) might help.
RE: Focal Segmental Glomerulosclerosis.... Hey, I'm in Hawaii, on vacation! No, seriously, this is a disease that affects the one million filters in each kidney which prevents valuable materials like albumin from passing in to the urine as it is being formed. When the "holes" in the filter are bigger than they should be, albumin passes into the urine often making it appear foamy like the foam in beaten egg whites (also albumin, but from eggs.) The loss of albumin faster than the body can replace it causes swelling in the feet. The scaring lead to progressive loss of one filter after another. Often prednisone is tried. Often, it doesn't work. The scarring leads to kidney failure and uremic symptoms, including nausea, weight loss and vomiting, anemia, bone disease. Eventually, dialysis and transplantation.
Now, in general, these are good questions, but ask your doctor and your nurses. They have a responsibility to help to educate you about your disease. The National Kidney Foundation and the American Association of Kidney Patients are 2 other sources. Encourage your relatives to satisfy their curiosity with these resources and learn lots about transplantation.
Larry, about to go to school in Hawaii.... it's been raining and windy for 2 of the past 3 days.
There is various work going on, largely experimental, in daily dialysis. This would be about 2-2 1/2 hours per day, but might challenge your fistula. It would lower that pre-dialysis creatinine. It may not be feasible because it may not be compensated, or the units in your area may have little experience in this method. I have no direct experience in this method, but magic happened when I applied 3 hours 6 days a week to a woman who became pregnant on dialysis and led to a successful pregnancy.
What is your vascular access history and have you discussed alternatives with your vascular surgeon and nephrologist? Pain in a fistula, in my experience is uncommon, and this should be evaluated and you should understand your alternatives.
Larry, now, in Hawaii, and starting CME @ 7:30 AM, Monday
Reply
- What does it mean when you say no albumin?
- No KT/V?
-I would also like to tell you that my dialyser is a 140. Do you think it should be a little more higher since im 150 and 4 hrs? I can talk to my doctor about it, lets see if shes happy w/ my chemisty. Also, I didnt say that our monthly labs in my unit is on Mondays. So yes my creatine will be high from a "free weekend". I do dialysis Mondays, Wednesdays, and Fridays. Should that make a difference, because it was 2 days without dialysis. We always do monthly labs on a monday, I dont know how other units do it. I belong to a Pedicatric unit by the way.
- Even if they did change the days for monthly labs: for an example on wednesday or fridays is monthly labs. The creatine shouldnt be so high because its only 1 day between those days of not having dialysis. I hope you understand me..lol! -Also I did thought about dialysis dialysis. But my unit only had 5 machines!! I also have school, and I would never say I out school first..I put my health first because without health you got nothing! But all of the patients are in a schedule, and it will be very hard to have dialysis everyday, it will miss up everybodys schedule. My nurses dialyze 16 patients a day, so imagine they leave around 1 am sometimes! So it will be hard to try to compensate dialy dialysis. I tend to get sick, from back to back dialysis. When the hurricanes were coming here in florida last yr, man i felt horrible. Very nausea, and very dry from all the dialysis. Not a good feeling.
Reply
-The pain is only when Im on the machine, the very second they take out the needles..Im fine.
-Never had a blood clot..I only take aspirin once a day..81 mg and yes its enteric.
Thankyou for poating..this is the longest post Ive ever made!!lol
April*
Sorry for the mistakes on spelling.:o)
Reply
You answered the question in the next sentence. You have a STEAL Syndrome and your surgeon should consider reducing the size of the fistula. I'm not a hundred per cent certain, but fairly confident so, if the surgeon disagrees, get a second surgical opinion. And please realize that no one can make a diagnosis like this over the internet with any level of certainty, and the last word is yours, and the doctors you choose to care for you.
Reply
It's conventional to draw the pre-dialsysis chemistries over the longest times between dialyses, so MWF patients would have their monthly chemistries drawn on a Monday. The number is also a reflection of the adequacy of dialysis or the need for more. The reason I asked you about weight lifting, is that, for a woman, the creatinine of 15 is high. The more muscle a person has the higher their creatinine is, whatever their kidney function. The simple solution is to increase blood flow, which in your case, is half or less than the usual blood flow. The first question, then, is why is the blood flow so low, and your report of pain with dialysis suggests that the higher blood flows would cause you more pain, and that's why you're being run at so low a blood flow. All of this can be reviewed with your doctor and the dialysis nurses who know you best.
Because pediatric patients are smaller, the dialyzers used in a pediatric unit may have smaller size and less efficiency. You should be on the largest dialyzer you can safely use for it will give you the best dialysis in the shortest time.
Do you feel as though you can't keep your legs still?
Larry
Reply
I hope you dont mind, but can you explain to me what FSGS is really, its kinda hard to explain to some of my relatives who dont understand what it is. Thanks :)
P.S- yes i can feel my legs when they are still. Sometimes I wont, but i start shaking, and moving my muscles..and its gone. Do you know if Neuropathy goes away once I get a transplant?
Reply
RE: Neuropathy and possible "Restless Legs Syndrome," ask your nephrologist if she thinks that might be a possibility, and if so, whether Neurontin (gabypentin) might help.
RE: Focal Segmental Glomerulosclerosis.... Hey, I'm in Hawaii, on vacation! No, seriously, this is a disease that affects the one million filters in each kidney which prevents valuable materials like albumin from passing in to the urine as it is being formed. When the "holes" in the filter are bigger than they should be, albumin passes into the urine often making it appear foamy like the foam in beaten egg whites (also albumin, but from eggs.) The loss of albumin faster than the body can replace it causes swelling in the feet. The scaring lead to progressive loss of one filter after another. Often prednisone is tried. Often, it doesn't work. The scarring leads to kidney failure and uremic symptoms, including nausea, weight loss and vomiting, anemia, bone disease. Eventually, dialysis and transplantation.
Now, in general, these are good questions, but ask your doctor and your nurses. They have a responsibility to help to educate you about your disease. The National Kidney Foundation and the American Association of Kidney Patients are 2 other sources. Encourage your relatives to satisfy their curiosity with these resources and learn lots about transplantation.
Larry, about to go to school in Hawaii.... it's been raining and windy for 2 of the past 3 days.
Reply
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