Hi Guillaume, Gus, Jane
I think the one constant about all this kidney stuff is that everyone is different. Blood pressure is a good example. The improvement I’ve had after starting daily hemo is dramatic for me, but, I’m someone who for years would be lucky to get 150/100 on 4 meds. Just to set the stage, I was hospitalized twice for malignant hypertension higher than 220/120. The kidney disease I had is notorious for that. It seems to damage the kidney’s filtering ability without impairing its ability to raise BP (in some people, anyway). In the 5-6 years before dialysis, I twice wore a 24 hour BP monitor and both times, separated by 2-3 years, I averaged 170/110 over the course of 24 hours. When I started dialysis, I finally started getting some better BP readings, but with meds. I would go into dialysis about 160/100. I never had hypotensive episodes on regular hemo, not even once.
Just one week after starting short daily hemo, my pre-dialysis BP was more in the area of 140/90, and sometimes lower. Post-dialysis, I almost always had rebound hypertension in the area of 155/100. We tried stopping the one med I was on at the time, but my BP gradually went up, and I had to start Adalat XL. In short daily, we were running the blood pump at 400 (about the same as when I was on conventional hemo). My neph (who has a lot of experience with nocturnal) insisted that my BP would drop once I switched to nocturnal, and that’s exactly what happened - and it only took a week or two to become consistent. After a couple of months, we had to raise my dry weight by 2 kg. Now, even with a 3 litre fluid gain pre-treatment, I almost always come in lower than 120/70. It stays relatively stable during the treatment (blood pump 300, dialysate 300). and by morning when I come off, it’s in the neighbourhood of 115/65. Now, all this might not mean as much to anyone else, but for me, this is more than dramatic… it’s spectacular. I’ve had plenty of problems with BP meds over the years, so, just having normal BP without meds is more than worth the effort and inconveniences of daily nocturnal. Note that my program leaves it up to the patient as to whether they do short daily or nocturnal, so I could decide to switch to short daily anytime if I wanted to.
The idea of blood pump speed is interesting one though. I don’t think that’s the factor in my case - but who knows?
Re: deep sleep
That’s something I’ve though of. I thought myself that it might be a problem, but so far, it doesn’t seem to be. When I get up in the morning, I actually feel refreshed and ready to go. I even seem to need less catch up sleep during the daytime than I did before - virtually none, in fact. I don’t know what the consequences might be in the long term, but since I started nocturnal, I feel so much better that I couldn’t even imagine going back. I have energy like I haven’t had in years.
Look, I’m not trying to convince anybody. I’m just reporting on my own, personal experience, for anyone who might be interesting in hearing about it. As I said, in my home dialysis program, short daily and nocturnal are interchangeable, so, it’s not like I’m permanently committed to daily nocturnal. In Canada, there are no financial incentives for nephs to put patients on any particular kind of dialysis. But based on my experience with it so far, there is just no way I would go back to anything else unless I was forced to. I only post about here because there doesn’t seem to be much interest from anyone else about daily nocturnal.
Honestly, I don’t know what my Kt/V is lately on nocturnal. It hasn’t been included in the format of lab report I get a copy of. I’ll try to find out though. I’ve just been assuming it’s Ok, since I get over 120 litres of treated blood volume every night. My neph only wants to see me every two months at this point.
For Jane…
When I say I start feeling uncomfortable when I get up higher than 2 kilos over my dry weight, I just mean that I start feeling a little bloated in the abdomen. It’s not like I can’t handle it until the next treatment. I don’t get short of breath, and I don’t even have any ankle swelling. I’ve had to miss one treatment when I happened to be 2.5 kilos overweight for a technical problem, and I made it fine another 24 hours until my next treatment.
For Gus
I actually don’t take any supplements, except the same renal vitamin I’ve been on since before I started dialysis. I add calcium and phosphorus to my dialysate jugs, but that’s only because these are designed for conventional hemo. They don’t make any with the right amount of these things in it for nocturnal patients. Other than that, I get Venofer once a month, 2000 units of Eprex weekly (may soon be reduced though). The only additional med I’ve started since nocturnal is calcitriol.
Pierre