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  1. #1
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    How do you know when it's time to start dialysis?

    In June my husband's kidney doctor told him if his kidney function numbers, like potassium and creatinine, did not improve he would have to start dialysis. The numbers did improve some, up until the last four weeks. His potassium today was 4.87, but his creatinine was 6.99, the highest it's been in a month. We asked the doctor this morning how we would know when it's time to start dialysis, and he was pretty vague. He's told us late this year/early next year, but he told us today not to follow the creatinine number, that dialysis would start when Ken didn't feel good anymore. Is there any "baseline" point at which dialysis should start?

  2. #2
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    Smile Re: How do you know when it's time to start dialysis?

    I have Stage 4 Renal Disease. My doctor told me I would get swollen ankles and stomach pains when it gets to Stage 5. I thought, well that's just great. But he is to the point. I go in for lab work every 3 months. We have talked mostly about a transplant. I have 2 sisters and 2 brothers. Also I have 2 children and 5 grandchildren. So my chances are 5050 for a match. I have had bad kidneys all my life. I was born with 4 ureters, 2 on each side. My right kidney stopped growing when I was a baby and my left kidney was normal up until this past December 2008. The renal diet is okay but I do miss a lot of food I can't have, especially smoked ham.

  3. #3
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    Re: How do you know when it's time to start dialysis?

    That question has a LOT of answers depending who you ask.

    You have two major groups.....
    One group of doctors believe the quicker you start the better long term outcome you will have. They will start you when your GFR drops below 14 if you are diabetic and below 10 when non-diabetic.

    The other group believes that when you are nearly dead and your heart can no longer take the high potassium and you start getting nausia and itching then only will they start. Usually FGR below 7.

    So I would suggest YOU have to decide.... when you can no longer function and your system gets to overloaded...

    It is a very dangerous game but if you starting feeling too sick to cope... ask the doc to start dialysis.....

    Just remember dialysis is a very successful treatment.... why wait... if it can help, start dialysis. Some people are scared to start it but I think if it is a treatment that can make you feel better why wait.

    Hope it helps.
    Please note: Any advice given is given from my own experience and not medical advice.

  4. #4
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    Re: How do you know when it's time to start dialysis?

    My husband has stage 4 ckd (from IgA). When his creatnine hit 4.0 (19% eGFR), the nephro asked him what kind of access he wanted... so they could start the fistula and try to avoid having to use a temp cath. He decided he wanted to do PD, and since that heals fairly quickly (a couple weeks), they told him they'd wait to place it until he hit 15 %. Then he'd start dialysis.

    He got referred for the transplant eval at 24 %... hoping to do a preemptive transplant and just avoid dialysis. by that point (i think his creatnine was 3.4?) he already had symptoms that were pretty bad. Fatigue, swelling, nausea... the usual.

    The doctor said that he usually waits until people have bad symptoms that are interfering with daily life- but will do it as soon as eGFR of 15% if that's what the patient wants, since that's when special medicare for ESRD will kick in and cover the costs along with the usual private insurance.

  5. #5
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    Re: How do you know when it's time to start dialysis?

    this may sem a little silly but, If you are sick this week and next week you are alot better then you shouldnt start???? examlple--- I was nausea and then got better. My gfrwas14 now it is 19%. I am watching what I eat. I am tired alll the time and dont sleep but 5 to 6 hours. I cant go to sleep till around 2am. back to the question of when to start, My answer would be to start when you feel bad for awhile, I am not on dialysis , but when the time comes and I dont feel good at all is when I will go on and do dialysis. Just my two cents worth.
    Adapt and overcome.......

  6. #6
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    Re: How do you know when it's time to start dialysis?

    My husband is the patient. I go with him to all of his appointments. He is at 12% function (or maybe even below-new labs next week) and not yet on dialysis. Sometimes he is pretty sick and other times just tired. His neph told him that when my husband cries "uncle" they will start dialysis. He doesn't have any other underlying issues. He has a forearm graft for hemo (placed 08/07/09), and is working through the process to be placed on the active list for a transplant. We watch his BP, swelling and other things (all the usual sumptoms) and would request start of dialysis if longer-term issues with the negative symptoms persisted. As noted in one of the previous messages on this thread there is no point in hurting other organs and making things worse.
    Cathy
    Wife of kidney patient age 51
    Caregiver for husband
    In center hemodialysis 1+ years
    Recent live donor kidney transplant 09/21/10

  7. #7
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    Re: How do you know when it's time to start dialysis?

    I asked in this post how you know when it's time to start dialysis. We found out last week that it's time. Ken's creatinine, potassium, and phosphorus levels are continually going up. He's also starting to get the nausea, although only in the morning for the most part. His doctor suggested starting it now while he still feels good rather that waiting until he gets really sick-OK by me! We meet with the surgeon on September 15 to find out when the surgery will be, and the dialysis will start 2 weeks later. He's going to do PD with the cycler-much easier for us. We live over a half hour from the dialysis center, so hemo was out of the question. So we figure no later than mid-October. His nephrologist told us last month that he would probably start late this year or early next year, so we were kind of prepared but not really. It came sooner than we expected. My son reminded us that at least we have the time to adjust to this; when Ken had his left foot amputated last year, it was done the day after we found out it had to come off. We have already been in contact with the transplant center, and he will begin testing within the next couple of months. Our son has unbelieveably offered to be a donor if Ken is a candidate.

  8. #8
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    Jan 2009
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    5

    Re: How do you know when it's time to start dialysis?

    That is the big question a lot of people wrestle with, including me. I am stage 5, GFR of 9 and Creatinine of 7.9. My potassium and phosphorous levels are completely normal and I do not have any other co-morbidities. I am quite tired and occasionally feel nauseous, but Ive never vomited. I do occasionally take sodium bicarb to battle acidosis and I do feel better when my pH is normal. I have very minor ankle swelling which I manage with varying doses of Furosamide. I have a mature fistula so I will be ready when the time comes which I expect before the end of this year.

  9. #9
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    Oct 2009
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    Re: How do you know when it's time to start dialysis?

    Hello! I too am trying to figure out if its time to start dialysis. My Creatinine is 5.00 (just did 24 hour urine to confirm) and my GFR is 12. My numbers have been about the same for 3 weeks now. Other than feeling tired, I'm doing ok.

    I wondering about the sodium bi-carb? How do I know if I need this? My CO2 is always high, and my chloride is always low in my bloodwork.

    Does anyone know if someone in my situation needs to be following a strict renal diet? What about fluids? My last Dr. never told me I needed to, but I am in the process of getting a new Nehprologist because I will need to see someone closer to my home if I am going to start dialysis.

    Thanks everyone!!
    -Lori

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