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.