Dialysis and When to Begin

Update 9/16/14:  When you are done reading this, please check out the comments at the bottom of this post.  They are excellent. 

I found this fascinating question and answer in “Ask the Doctor

My dad has stage 5 kidney disease. GFR was 13 a month ago, and 10 about 2 weeks ago. His doctor is looking at the creatinine level and saying that he has about a year to go before starting dialysis, however we should look into the transplant option. His creatinine level is around 5.2. Looking at the GFR, I feel like there is not much time, however the doc seems to think he’s OK for another year. What tests do you use to determine the amount of time left on your own kidneys without dialysis or transplant?

Dialysis is not based on any specific number.  Dialysis is based on having specific symptoms that can be treated by starting dialysis treatments.  This is commonly based on discussion between your father and the nephrologist.  There is discussion about the risks of treatment and the burdens of starting dialysis care versus the benefits of relieving symptoms associated with chronic kidney disease (CKD).  Only the nephrologist can make recommendations and your father must decide about whether he is willing to endure the burdens of care.

The answer is short and to-the-point but it leaves much to the imagination about when to begin dialysis.  At first, I wanted to just re-blog the post but I’m concerned that the answer is too brief and not very informative.   It is a “safe” answer in that it basically says, “well, it’s relative.  Only the nephrologist knows when to begin dialysis. The doctor will tell you when to begin and then you can decide to do it or not.”

Granted this guy is probably older (since he’s someone’s father and they are asking for him) but I take issue with the “whether he is willing to endure the burdens of care”.  What “burdens”?  Dialysis for older folks is probably more difficult than younger people but you can’t just assume he’s old and frail.  Some older people are pretty sturdy!  Anyway, I digress.  I need to return to the question of “when to begin”.

In my case, I pushed dialysis off for at least a year but not through any particular method like diet or such.  I just kept pushing the limits until the doctor finally declared, “It’s time.”  He said my creatinine wasn’t bad but my BUN (Blood-urea-nitrogen) was getting to a level of being dangerous.  So, I began.  If you’ve been reading my blog, you probably know my experience with “Dialysis and the First Stick”  or “Dialysis and the First Stick – more.

So, the answer to the question of when to begin is relative is correct.  It really depends on the factors involved.  Some people are informed early enough while they are in CKD (Chronic Kidney Disease) and before ESRD (End Stage Renal Disease) to know what to expect.  Then, there are those who find out in the emergency room that they must start dialysis now.  Some doctors will tell their that dialysis is an eventuality if that’s the case but not all doctors will be that informative.  I’m not sure why but that’s the way it is.

If you are CKD and haven’t started dialysis, you will probably be told your “numbers” based on the labs.  When I was in CKD, the number to watch was creatinine.  THe, like I write above, it was the BUN.  The doctor was watching a combination of the numbers but I was only told about those two.  Recently, the GFR (Glomerular filtration rate) is the popular measure,  However, when you read about it, you’ll note it involves the Serum creatinine level and that is central to the GFR calculation.  Most people I speak with who are CKD and and pre-dialysis are watching their GFR.  Unusually when it gets to about 20 percent (in other words, their kidneys are functioning at about 20 percent of “normal”), their doctors are telling them to get ready for dialysis.

In the case above, I’m a bit suspicious of those numbers and the doctors estimate of “a year to go”.  A GFR of 13 is very low because it’s under 20.  I personally think dialysis will be called for in less than a year.  It’s more like immediately.  But, the doctor is the expert, not me.  However, the doctor could be wrong and this man could end up in the ER and begin dialysis much sooner than a year.  Knowing he has a year, they should begin preparation for dialysis including getting an access.

That’s about it.  When to begin dialysis is “relative”.  It depends on when you transition from CKD to ESRD.  If you have some notice that it’s pending you have a chance to get prepared for it by having an access made or (“Dialysis and the Access“) so you don’t have to put up with a chest catheter.  Talk to your nephrologist and make sure you understand what he/she is watching for and how score in those measurements.

About DevonTexas

I am a person with ESRD (End Stage Renal Disease) which means my kidneys don't work. Forty or so years ago that would have been a death sentence but today there is Dialysis which means I could be hooked up to a machine that would clean my blood as the kidneys should. Three days a week, I went to a dialysis center and had too very large needles stuck in my arm to remove and replace my blood as it passed through a process where it was cleaned and the fluid was removed, a process taking a little over four hours each time. In November 2017, I received a kidney transplant from a deceased donor. My life went into overdrive. With a "new" functioning kidney, I no longer had to go to a dialysis center and my days were not open to be lived rather than recovering from dialysis which meant dialyzing for three days and resting for 4 days a week. I work full-time and often 50 hours per week. It is something I never imagined. I highly recommend it! HeeHee I want to advance knowledge about dialysis and transplant so that others can learn from my experience and mistakes. We shouldn't have to reinvent the wheel, eh? There is so much to be learned and experienced about our predicament. There are vast resources available to support us and enrich our lives but many patients don't know about them. There are also many issues that we have to deal with whether we want to or not. So I blog about them in www.DevonTexas.com All comments are confidential until I approve them. If you don't want your comment public, let me know and I will respect that. So, feel free to leave a comment. I also blog in LegacyTales in WordPress if you are interested in the ramblings of a Old Man. Give a peek and let me know what you think. https://legacytales.wordpress.com/ Enjoy.
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19 Responses to Dialysis and When to Begin

  1. kKidneycone says:

    Pulling from my experience I would suggest beginning dialysis sooner tan later. I wished that i had started treatment earlier. I believe my mental health condition would not have been as severe if I had done so. Your mental health has an extremely important role in recovery and maintenance.

    • DevonTexas says:

      And I would agree! Good point. Looking back, I thought I was doing the right thing by pushing it off but I suffered for it. The pain and discomfort of dialysis is not that much compared to the symptoms of later stage CKD

      • kKidneycone says:

        Absolutely,I find it relevant that the love ones of the patient is in dire need of counseling as well. this disease has a never ending effect on all those involved. I’m attempt to comfort all those i come in contact with at my facility.

      • Kwame cone says:

        I not only wan’t to discuss the complications of denial of ESRF. I believe that the mental health aspect should be treated by a Mental Health Professional. The actual process of waiting for your Kidneys to stop working is detrimental to your recovery, and a persons ability to focus on life after ESRF. Then there’s the relationship aspect. My marriage fell apart primarily because I could not maintain a comparable wage as I had before ESRF, my my ability to be intimate physically cease to exist and emotionally I was inept as well. Where does one go to attempt to enhance there social like.

      • DevonTexas says:

        That’s a good question and I’ve seen it frequently, especially among younger people. The social network forums like Facebook probbly is the best place to begin. There are several private groups like Dialysis Discussion Uncensored that may be a good place to start.

      • Kwame cone says:

        Good afernoon, I would like t speak of the process of being able to develop a relationship with a women. My significant other was mentally exhausted dealing with my lack of motivation to be intimate. My state f mind at that time was opposite of how i am naturally, I was married for 18 years and my personal income droped from 70.00 to 18.00 from disability. I’m struggling to find a place for my daughter and me, This is truly a struggle, HELP PLEASE, I could use some help.

        God Bless my dialysis family.

  2. Nachomama311 says:

    This post totally pushes a button with me and the variance of treatment we receive. I feel a patient should start dialysis when signs of failure are eminent and BEFORE any symptoms begin. As a proactive move, the patient will stay healhy longer and prevent further damages being done by the decline in health.

    When I was told to see a Nephrologist, I had no symptoms yet, and did not realize I had already bypassed all CKD stages and was already in ESRD. When tested, I had only 10% usage of my kidney, which should have been an obvious decision factor to put me on dialysis. Instead, my doctor said that he wanted to “wait”. Not sure why, but b/c he was the expert, I followed his advice. Over the next year, as I ended up getting sicker and sicker (I was literally using my every ounce of energy to just walk across the room, vomiting every time I turned around, swollen from head to toe from the fluid retention, and visiting the ER for pleurisy every other month), he STILL said he wanted to “wait until I was sicker”. That to me is INSANE! It wasn’t until my body finally shut down causing stroke-like symptoms (I couldn’t speak, my mouth wasn’t working) that the ER told me I had to start dialysis immediately. Once I finally got situated with my dialysis center, they told me that I should have started a year earlier! I totally agreed and was livid that my doctor had put me at such a risk.

    Dialysis is to help patients live a better, healthier life. Being denied that, and making the patient get worse to the brink of hospitalization is strictly abuse, IMO. There is no reason a patient should have to suffer and be as sick as I was, for that long. Not to mention, the maintenance of trying to stay healthy during that time (with bi-monthly iron infusions, medications, possible ER visits to combat the symptoms) are WAY more expensive and difficult on mind AND body than starting someone on dialysis earlier! You are your own advocate, and if you feel you can’t manage the symptoms of CKD any longer, tell your doctor you’d like to start dialysis as soon as you can. And if he/she refuses, get a second opinion. It’s your body…and you WILL feel better almost instantly!

    • DevonTexas says:

      Nachomamma! A Stunning example of what happens when you wait too long. It’s terrible that you suffered as you did so unnecessarily. We expect doctors to “care” for us but yours obviously didn’t get the memo. As I was asked once, “What do you call the person that graduated LAST in their medical school class?” The answer, unfortunately, is “doctor”.

      Thanks for sharing.

  3. My doctor had me get the fistula when I hit GFR 17 so I would be ready when needed. He thought it would be six months to a year away. That was May.2013. When I hit 13 (JUNE) he started talking about sooner than six months. I stalled two months because I wanted to be dialysis free when I celebrated my 40th anniversary in Aug. I was at 11% before we left and the doctor gave orders to my husband on what to watch for in case I got sick. He had told us that 10% GFR was best time to start because that is where the dialysis machines keep the function of your kidney’s. My BUN was high but what was more of a concern was the make up of the cells that keep my white and red blood cells together. They were breaking up and I was losing blood.. So GFR, BUN and blood cells were the factors for my start of dialysis October, 2013.

    • kKidneycone says:

      Im not sure of your mental state, I have been on for five years and initially was resistant to dialysis,ow i have no choice i wish I had started much earlier. its hard but important. don’t put it off the process will e be ore tolerable if you surrender. God bless, I ca only speak for myself but aybe you should think of a power more than yourself to dael with this life altering situation. Another person can’t get it until they hear the words u have CKF. be blessed. write if u choose. Kcone50@outlook.com. Peace and Love sister.

  4. Kwame cone says:

    I would like to focuse on the mental health aspect of Kidney Disease. I have experienced the devistation of this disease. Mental stability layes an inportnt role in recovery.

    • Kwame cone says:

      Peace and Love dialysis family. I have been attempting to talk to other ESRF clients at my dialysis treatment center. I found that allot of people are still struggling regardless of their tie on treatment. I also canulate myself. I started this when I was doing Home Hemo. I find myself being extremely distrustful of others sticking my fistula.

  5. Kwame cone says:

    Devon and ESRF family, I’m am attempting to hear from people who’s lives has been drastically altered due to Kidney failure. How’s THE LOVE LIFE if any.????

  6. sra113 says:

    I am 62 years old and have polycystic kidney disease. I am terrified of all needles and medical procedures. My creatinine is 6.8, but I refuse to start dialysis. I have no symptoms, feel fine,and work full time. How do I deal with pressure from my family and my nephrologist to consider dialysis when I am against it (even peritoneal dialysis)? They are making me feel guilty, but I still want to refuse dialysis. I have been on a transplant list for two years and have gone through all of the information about dialysis. I just cannot do it.

    • DevonTexas says:

      Great question! I’m not sure what to say, frankly. If you don’t want to start dialysis and you are being advised to do so, that’s a predicament.
      When I was first diagnosed with CKD (Chronic Kidney Disease) and as it proceeded through the steps to ESRD (End Stage Renal Disease), I was a bit like you. It wasn’t the needles as much as it was the interruption of my busy lifestyle. Like you, I was working and I really liked my independence. Dialysis would disrupt that. So, I suffered through all the stages and finally my doctor told me that my blood chemistry was getting to the danger point. My kidneys were at about 10 percent function and all my labs were to the breaking point. I thought about it and since I was still able to work and I was too young to give up (I had two boys that depended on me), I decided to go ahead and do dialysis. Yes, it’s difficult at first but it gives you added life. If you don’t, you will die a slow agonizing death. I don’t say that to frighten you. You’re already scared. I say it to make the point that fear of the needles is, hopefully, less than the fear of dying early. You can continue to work and life your life actively. We are so fortunate to have a treatment that makes that possible.
      Finally, stay on the transplant lie but often that takes a long time. I have been told the average wait is seven years! So, don’t put off dialysis if the doctor says it’s time. Read my postings about “Dialysis and the First Stick”. I hope it gives you some information that will ease your apprehensions. Often fear is lack of information and knowledge. Read up and perhaps you won’t be so fearful.

      Also, it may be helpful to read my posting about “Dialysis and Acceptance”.

  7. Hello. My dad was informed yesterday that his GFR is now 11% and he is having his access put in next week…we didn’t know that he had to wait 3-4 months after having the access put in before he could start dialysis. The doctor’s plan is to begin dialysis in early December…it is now July 31. I’m concerned that his kidneys could get much worse before then. Do you think his kidneys could hold out until December? My mom just started rubbing essential oils on his back over his kidneys, something that has helped my uncle go from stage 4 back down to stage 3. Also, my parents decided they’d like to go on a cruise with us in September before dialysis begins…should I be worried about that? I fear he will have a medical emergency out in the middle of the ocean. I’d also like to note that he has severe beta thallessemia (anemia) and has to have a Aricept shot every month to bring up his blood count. Thank you for any advice.

    • DevonTexas says:

      It’s all a matter of time but the doctor probably would have ordered the fistula earlier if he thought you Dad needed it. So, I assume he feels there’s enough time for the fistula to “mature” and be ready for use. That usually take 3-4 months. In the event he kidney function fails completely, a chest catheter will be necessary. In that case, it’s worse than it sounds. It is inserted (usually under general anesthesia) into the chest and two tubes hang out into which the arterial (artery) and venous (vein) connections are made into the dialysis machine (Dastardly Dan). Most docs only use a catheter as a last resort.

      I hope this was helpful and answers your questions. The long and short of it is that there’s no specific answer for your question about your Dad holding out until December. In my case, I got my fistula in March and started dialysis in August (anniversary coming up! What gift should I get?). Please take a look at “Dialysis and the First Stick” for some idea of what is to come. Most of your questions should be answered by various posts I’ve written.

      • Thank you! Were you able to resume life as normal as your fistula was setting? He wants to go on a cruise before starting dialysis, about six weeks after the fistula is placed.

      • DevonTexas says:

        Please excuse the delay. I hope you’re already on the cruise. There should be no reason he can’t go. It’s like having any minor surgery. However, the doctor should confirm that he able to travel.

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