Learning much, thank you!

[texasstyle]

In the short time I have been here I am grateful for learning so much, so quickly. Thank you all for sharing your knowledge & experience. Trying to comprehend more about the emotional aspect of a dialysis patient. My husband is pretty much a non complainer, even to his unit. On dialysis 2  years at 2x a week. He has been saying they want more time but he feels "it's just for the money". I have researched over the last 2 years kidney functions, failure, and dialysis. This seems to be the BEST place to get the information I'm truly looking for. I must admit I have a million questions (or more), but am feeling somewhat of a bother as I am trying to navigate and learn how the site runs. Oh by the way, that barfing smiley really cracks me up! Carolyn

[Hanify]

No no no!  Don't ever be afraid to ask.  Ask ask ask.  I'm sure the others here would agree with me that being able to answer someone's question give me a real buzz.  Sometimes I can't either, but will just have an opinion (actually, sometimes too many opinions!).  Ask away.

[texasstyle]

Alright, I won't be afraid to ask anymore but I must warn you, I've been known to bend some ear from time to time lol. One thing that's got me thinking a lot from a recent reply is how much the kidneys are always working. 24-7. I'm going to call my husbands unit next week to speak with his nurse about his adequacy. 6 hours on dialysis a week doesn't seem like very much now. He goes Monday & Friday 3 1/2 hour sessions. I can only imagine how much he'd feel better if he were being cleaned more often. I think it would help with the moderate fluid build up in between. He takes 80 mg. water pill on off dialysis days. Does that sound normal?  Can't sleep at night either & after being on Ambien CR for a couple years that's seeming ineffective. Got wonder if that's building up in my system as a toxin. He's always tired and has not motivation though some days are good. He talks about how depressing it is there and that he couldn't take going more often. That's why he's thinking of doing it at home. I'm the pro-active one, sorta his nurse. I'm doing all the research. Aaah, it feels so good to talk about this.

[willowtreewren]

Hi, Carolyn,

Even though we play around alot, this is still the best place for answers. Ask, ask, ask.

I really understand about it being depressing to go in-center for dialysis. Doing it at home is better for us, BUT it is lots of work.

On the up side, my husband can get up from dialysis and go right to work at whatever he wants to do. He doesn't have that washed out feeling and his energy level over-all is much, much better than it was before dialysis.

We sometimes have to take and extra day off, but we NEVER do it two days in a row.

When we started our training for home dialysis, I had my doubts about being able to stick my husband's needles, but I made it! We do what we have to do. 

I can guarantee that your husband would feel better with more time on dialysis. He needs to get those toxins out of his system!

Best wishes.
Aleta

[monrein]

Is your husband still peeing quite a lot Carolyn?  I ask because my neph took me off diuretics (Hct) once I was on dialysis and my urine output had decreased.  I don't know much about this but my understanding was that if the kidneys can't get process and remove fluid from the body then a diuretic could further disrupt electrolyte imbalances and of course we already have plenty of those.

Anyone know more about this or simply what have been your experiences?

I've also read that diuretic use in ACUTE kidney failure (you know, the one we don't have, the one where your kidneys come back to their senses after a while) increases mortality and can further damage the kidneys.

Diuretics are of course extremely useful in the earlier stages or ESRF as they help control hypertension and edema.

[del]

Ask any questions you need the answers to texasstyle!!!  Somebody will probably be able to help. 6 or 7 hrs of dialysis a week does not sound like much. How is his bloodwork and his clearances. If he is not getting adequate dialysis it will make him have trouble sleeping and he will be tired.  I don't know of many people who only do 2x a week.  Most people do 3 times and that is barely adequate for a lot of people. My husband felt good doing 4.25 hrs 3x a week but he feels so much better since he started nocturnal home hemo. he does 5 nights a week for 7 hrs each night (while he sleeps)  .  Just my  but I really think your husband is not getting enough dialysis!

[texasstyle]

Monrein & Del, yes he is peeing but he doesn't stick to his fluid intake the way he should either. I know how important that is including fluid in soups and watching the salt. The diet is important but I can't stress this enough to him. His bloodwork comes back pretty good as far as proteins, and usually calcium. One in a while they're off. Sometimes the hemo's are down. If you mean by clearance, adequacy, it usually comes back saying "You're dialysis adequacy is low. Be sure to go to every session." yet he tells me the nurses are saying his numbers are good. Hhmm.....it confuses me! lol. So nocturnal home is the same as peritoneal right? I'm sure in about a month from I'm going to have such a better understand  of how this whole process works. I knew the very basics, something to start from, but you guys will never know what a big help you are! Today was pretty good. We were able to enjoy some R & R at the pool. As soon as we got home he headed to the couch though lol. Hope everyone's enjoying the rest of their weekend. Carolyn

[aharris2]

... If you mean by clearance, adequacy, it usually comes back saying "You're dialysis adequacy is low. Be sure to go to every session." yet he tells me the nurses are saying his numbers are good. Hhmm.....it confuses me! lol.

So nocturnal home is the same as peritoneal right?

Carolyn, your husband is on dialysis only twice a week? Why? The in-center norm is three times a week.

About the numbers being good but the dialysis being inadequate depending on who's telling the story... There are a lot of numbers. Adequacy is usually measured by "kT/V" (please don't ask me what it means but it is related to before and after dialysis BUN.) Our nephrologist tells us that 1.4 is considered adequate. Less than that then your blood is not being sufficiently cleaned. Some other numbers which might be good even with less than adequate dialysis are phosphorus, calcium, potassium, albumin, and on and on...

Nocturnal home dialysis can be hemodialysis or peritoneal dialysis.

(...the pool sounds good, so does the couch!)

Alene

[del]

Nocturnal home does not have to be peritoneal texasstyle. My husband has a hemo dialysis machine at home to use.  In the states a lot of people use nxstage for home hemo dialysis.  A lot of people (including health care professionals) think that when you say you do home dialysis it has to be pd.  Short daily and nocturnal hemo dialysis are excellent dialysis treatments. Toxins do not get a chance to build up in the blood.