Dialysis: how much is enough?

I had a really interesting email from Sarah in Nebraska last week.  It’s interesting because it demonstrates how bad things can get if you don’t get the dialysis you need.

Sarah: Hello Greg, I stumbled onto your website tonight and was hoping you could give me some advice on my son John’s dialysis. He is 25 and has been on dialysis for a year and a half….He had a heart transplant when he was 21 months old and the anti-rejection drugs destroyed his kidneys…Now he is on the transplant waiting list and we are still doing in-center hemo…We are going to switch to PD in a couple of months…If you are still updating your blog and you get this will you please let me know ?  Maybe you can help us…

Thank you, Sarah.

BigD: I said I would be happy to help.

Sarah: Greg, Thank you very much for answering…I was reading your blog and saw that you exercise and seem to be pretty healthy despite dialysis…that has not been our experience with John…He has lost over 20 pounds because of never-ending nausea ..he has all but lost his appetite, he is weak and now they tell us at the center that he is malnourished…

That is why we are switching to PD.  Many people have told us that it is much easier on his body especially his heart.  And it is supposed to stop the nausea and help him regain his appetite…

I was just wondering if you have had experience with the nausea and loss of appetite…and how you are able to exercise and have the energy you have…

I am very worried about my son.  Of all the people in the (name withheld) Center where he goes he is by far the youngest.  I don’t think there is one person under 60 there, but not one of them has the problem with the loss of appetite and nausea that John has.  He has had an endoscopy to rule out other problems as well as other tests…I’m just at a loss as to why he is not doing well and so is the nephrologist at the center.  He has many doctors but none of them so far have been able to find the reason why he is sick….

I was hoping maybe you had heard of other patients who had his problem…

Maybe the PD will solve all his problems…I certainly hope so.  Also how often do you exercise now and how did you get started?  Do you have a fistula in your arm?  And if so does it hurt your fistula to lift weights?  I’m sorry for all the questions and I very much appreciate you answering me..

If you have had any friends or known anyone who had the same problems with hemo as John does I would love to hear from you ….Take care and thanks again.  Sarah

BigD: Sarah, I have asked people whose knowledge I respect about this and the first thing they said was that failing to gain weight, nausea, etc. are classic symptoms of under-dialysis.  How long does John dialyse each week?

To get (and stay) healthy he should be dialysing for 12 – 15 hours per week, either 3 times per week for 4.5 or 5 hrs or (like me), 5 times per week, 3 hrs per time.  The 5 times per week is absolutely the secret of good health.

If John is not getting the time on the machine that he needs, for whatever reason, he will continue to be unwell, and could get worse.

If John is getting his 12-15 hrs, then the next thing to look at is his fistula.  It may have a blockage that is not obvious to you or the staff.  You can get it examined via a scan or a fistulagram (I had one recently and mine required surgery – check the blog here for details). Basically, they inject a dye into the fistula and watch where and how fast the blood flows through it.  They can usually do most fixes on the spot.

Regarding PD, yes, it is easier on the heart, but it is less efficient.  However, if it means he gets more dialysis than he is at present, it should help him improve.

Sarah: Well that certainly makes sense Greg…John is on for 4 hours 3 times a week right now at the center.  But he is so sick that he only makes it 2 days a week on average…so he gets about 8 hours a week dialysis….We are trying to get him there every day he is supposed to be but its hard…He has been sick since his first treatment.

But he did go in and get the catheter placed in his stomach on Monday for the home PD so I think that he will actually be getting a much better quality of dialysis now than he was, since if he’s sick he can stay in bed and still do the treatment….So we are hoping for good things.

Thank you for checking up on this for me…I do agree that he is not getting enough dialysis…we are working on getting him there every time now.

Anyway thank you very much for answering me…it’s a comfort to talk to someone else who’s in the same situation as John… Sarah

BigD: Thanks Sarah.  That is definitely the problem: John is simply not getting enough dialysis.  It is a real pain, but there is no such thing as being too sick to go to dialysis.  Missing sessions always makes things worse.  John needs dialysis to survive and eventually to thrive.  For the rest of the time before he switches to PD, try to get him there for every session. I am sure you will both notice an improvement after a week or two.

Good luck and please let me know how John goes on PD.  Greg.

I have now been dialysing for 16 years.  During that time I have tried many options and combinations aimed at reducing the time I spend on the machine.   What I have eventually realised is that my aim should not be to reduce BigD machine time, but to do whatever it takes to be fit and healthy when I’m off the machine.  My 15 hours allows me to exercise, work and play the way I want for the rest of each week.  Anything less, and the week quickly becomes a misery. It’s a pretty simple formula.

4 thoughts on “Dialysis: how much is enough?

  1. I switched to PD after 3 months on haemodialysis and am currently on APD. APD suits me very well as all I need is to hook myself to the cycler every night & do an exchange in the evening.

    John might benefit from APD.

    Like

  2. Hello, my name is Martin and I have been on Dialysis for a year and a half. I was really overweight and out of shape. I am now doing P90X and have modified my diet. I have lost about 45-50 pounds. I currently have a catheter and the Doctor and Nurses are encouraging me to get a fistula. I have’nt had any problems or infections up to this point and my clearance has been good. My question is; if I get a fistula will I be able to continue to work out at this level without a problem after the fistula heals because I don’t want to decrease my progress. I am pretty healthy other than my Kidney malfunction and I am on the transplant list here in Denver Colorado at University Hospital. ps. if you have any information on transplant centers in other states I would appreciate the info. University is extremely slow and they don’t communicate very well.

    Like

    • Hi Martin, thanks joining the discussion and congratulations on getting back into shape! You should have no trouble keeping up your fitness regime when you get your fistula. The vascular surgeon who “updated’ mine told me that exercise was fine and encouraged me to continue keep at it.
      With regard to getting more transplant info, many hospitals run transplant seminars, where doctors, nurses and transplant recipients talk about the various aspects of transplants. Here is a typical Agenda:
      • Types of transplants
      • Graft and patient survival
      • How the donor waiting list works
      • Transplant workup for recipients
      • Transplant workup for donors
      • Admission and Post transplant care
      • Recipient experiences
      • Post transplant follow-up, rejection and infection
      • Malignancy
      • Medication
      • Nutrition
      • Social aspects
      • Physiotherapy.
      If they don’t run this kind of thing, visit them and use the list to ask questions.
      Keep in touch! Greg

      Like

  3. Thanks for responding Greg. I have been to a transplant seminar dicussing all of the aspects of transplantation. What I wanted to know is if there is a national network where you can put your name and information in so if a Kidney becomes available in their state or program you can be contacted and go there immediately. My team here at the University said that they participated in some network that would notify them if there was a match somewhere other than Colorado but; they are not very proactive. It seems more political or money motivated. If you are a big enough name or have the potential to “donate” large sums of money to have a wing named after you it seems they are very proactive.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s