A quandry

As I approach the end of my third year on dialysis I face a quality of life conundrum. The typical end stage renal disease patient dialyzes three times per week, but my general good health has allowed me to dialyze only twice a week and maintain my numbers. Sometimes I hover on the dangerous edge of the numbers, but I generally keep things in check. In recent weeks I've seen a few of my numbers climb a bit, a sign that perhaps my twice a week treatments are no longer enough to truly keep me safe. What does that mean exactly? In the worse case scenario it means I run the risk of a stroke and death, on the lesser side it means perhaps if I keep this up for a long time I could do damage to my body that will have future impacts on my overall health.

A month or so ago I had received a letter from MGH informing me that as a resident of Massachusetts with type A blood on average I can expect a transplant sometime between the end of my third year and the end of my fourth year. Now there's no guarantee that this will be true... it's just an average scenario. Still I think it's fair to assume that my time on dialysis is winding down and hopefully I have less time ahead of me than behind me.

I've always had issues following a treatment. About two hours after every treatment I get a headache. I usually just go to bed and do my best to sleep it off. Then I awake on the following day feeling like I'm made of straw... I feel dry and brittle. I feel hungry in a way that I can't seem to satisfy, but simultaneously most foods don't sound very appealing to me. In the last 6 to 8 weeks there's been a change in my post treatment issues. The headaches have moved to a new extreme and I'm vomiting in the middle of the night. I don't sleep well and I struggle to get up the next day.

My dialysis center team has been suggesting that perhaps I ought to try going back to three times per week. I've been stubborn about the suggestion and quite frankly haven't been willing to believe that adding back a treatment each week would resolve the problem. In my mind it would mean one more night of getting sick and one more day of feeling like straw. Who in their right mind would want that?

But in an effort to prove to my center that the additional treatment each week isn't the solution I agreed to have an extra treatment last week. Then prepared for a miserable Wednesday evening and less than wonderful Thursday. But my Wednesday came and went with minimal issue and my Thursday was not as difficult as my recent Tuesdays and Saturdays. This was unexpected. I assumed it was a fluke and that Friday I would return to business as usual. But again Friday's treatment was my first in weeks with minimal issue.

So I'm finding it hard to argue with my center and my doctor that three treatments per week would be better all around. But this creates a new concern. Leaving early from work on Mondays and Fridays impacts my weekly income. Adding Wednesdays will hurt financially. Also that I'm not vomiting doesn't mean I'm not still dealing with headaches and the straw feeling.... so I'll be adding a day each week of feeling less than great in place of two nights of pure misery... neither is acceptable but those are my choices.

People will say, "well, can't you work longer hours on the days that you don't leave early?" To which I reply... why should I be required to? Am I not working hard enough by attempting to put in as many hours as I can while also trying to maintain my 8 hours of treatment (and would be 12 hours) each week. Or perhaps they would suggest that I dialyze later on my treatment days so I can work more hours... and that means I get home later at night and don't eat diner with my family. You see it's a quality of life thing. What part of my life am I willing to give up so I can live long enough to get a transplant?

And even as I type this I have no idea what to expect on Monday night. The two days between Friday and Monday will still be there if I go three times per week... will I still get the extreme headache on Monday nights? So now my weeks will include one night of misery and two less than great nights and three days of feeling like straw?

Folks, I haven't even begun to talk about the financial stress of having recently been forced onto medicare as my primary health care. But that sounds like a topic for another day.

My name is Bil... and I have kidney disease.