really getting excited over home hemo

[jmintuck]

Once my fistula goes into full swing, I am going to re-hitup the doctor again to remind him to set me up with trainers for home hemo. I can't wait to GENERALLY escape the In center routine. Once this happens, I will be so glad. I will be able to possibly set up times to DO the dialysis and actually do it at anytime I like within reason. Yes, I will absolutely MAKE myself go to doctors appointments, like normal. That: is a given!

No, I will NOT do peritoneal dialysis for a few reasons: One, it would ban me from chances for pools and possibly ocean and the like. This would mean virtually no beaches as temptation would be too great to handle. Showers are questionable. Infection seems way more possible as there is a permacath of sorts in the abdomen and the peritoneum is a known sterile place. I don't need additional risks like that.

I prefer old-fashioned hemodialysis. Why? The idea seems so much more clean and possibly more sterile as I see what the heck I am doing and watch carefully. I can go into pools, ocean and lakes and so on, plus take showers. No more catheters once the fistula is well underway.

Sure the diet may be stricter for hemo, as opposed to peritoneal dialysis, but I can handle that for what I need. Not too much problem with the diet, for some wierd reason. IDK why, but it isn't as bad as I thought it would be.

[Simon Dog]

If you are motivated, home hemo can be great.   On the hose right now.

[Xplantdad]

My daughters clearance number are at 2.98...so her time on the machine got reduced by 35 minutes. Now she's on the cycler for 2:05

[SutureSelf]

My daughters clearance number are at 2.98...so her time on the machine got reduced by 35 minutes. Now she's on the cycler for 2:05

"More dialysis is better for your health. If you get more treatment, you'll feel better, have fewer diet and fluid limits, your heart will stay stronger, and you may live longer. "

http://www.homedialysis.org/life-at-home/articles/hemodialysis-why-more-is-better


KT/V is not a good dialysis indicator.

http://www.therenalnetwork.org/qi/resources/HDP.pdf


EDIT:  Plus, shorter time usually means high blood pump speed which in turn causes fistula problems ("flogging the fistula").

http://homedialysis.org/news-and-research/blog/38-dont-flog-fistulas-slow-hemodialysis-blood-flow

[jmintuck]

If I can do a dialysis possibly 4 times a week AT HOME instead of 3 in center, that would help, especially if I can do it after supper or in the morning, any of those time slots. IDK if it actually would be any faster pump yet, or what.

[Simon Dog]

If I can do a dialysis possibly 4 times a week AT HOME instead of 3 in center, that would help, especially if I can do it after supper or in the morning, any of those time slots. IDK if it actually would be any faster pump yet, or what.

The pump won't be faster (it will be slower if you do nocturnal).  The norm with NxStage is 5 or 6 times a week.  If you get the Baby K the norm is 3x/week, but you're better off doing 4x or every other day rather than 3x.

I do 5x/week, and the total burden of being on NxStage is less than the clinic.   I fit dialysis around my life rather than the other way around.   

If I had a clearance of 2.98, I'd keep the extra 35 minutes.   I am at 2.5 on 5x/week, about 3.5 hours each time.    (I get penalized for weighing 108kg)

I dodged the LVH bullet at my last cardiac workup, which I attribute at least in part to the smaller fluid shift that comes with the more frequent dialsyis.    I almost never take off more than 2kg, and my "long gap" is skipping a single day, not two.

On top of that there is an advantage to being able to do your own needlework when you have to go in-center for a bit (I use in-center when traveling).

[Xplantdad]

Hi Sutureself and SimonDog-

My daughter Holly who is 26 years old, doesn't have a fistula, she has a 2 year old CVC. 

She's a heart transplant-and has been on immunosuppressants of various kinds for 26 years....which is why she needs the kidney transplant now

She's on the NXStage cycler 5 days out of 7 (off on Wednesdays and Saturdays).

We set her pump speed at 350-which from reading on some of the posts here...is not that fast?

Her original 'set up' was for 2 hours and 50 minutes, some times she was on for as long as three hours and 10 minutes. 'In center' she was on for 4 hours.

My daughter was actually feeling REALLY crappy with the longer times and her blood pressures we getting really high at the end as well, especially with the longer treatment times. They have been trying to get her to feel better, not worse during treatments. We were constantly playing with dry weights and I think we were having fluid shift issues, too.

She gets blood tests bi-monthy at Mayo for kidney and cardiac levels (among others) and we also send in the blood tests pulled at home, too.

Only once in almost one year of home hemo have we had to take off more than 2kg-and that was when we took off 2 and a half days in a row (Friday and Saturday and did dialysis late Sunday) after having to go to Ca. for a funeral for a family member.

What I do know is that we have a very strong cardiac team at Mayo that follows her very closely...and we have a wonderful nephrologist that purposely schedules her as his last patient so he can spend an hour plus talking with us. We have been blessed with great docs!

So, maybe this works for her...but not others?  I do know that everyone is different-and bodies respond differently

As always, we are looking to see what works for others...and learn from the long timers here and we value everyone's opinions....though we hope that her time on dialysis comes to an end soon with a kidney transplant

[cassandra]

Well in Clinic I never had higher than 300 pumpspeed as it made me feel hyper, and the last 4+ yrs at home on Nxstage I've never had a pumpspeed of 290+. I do 2 on 1 off mostly. Sometimes a bit longer, sometimes shorter, but mostly 2,5 hrs. Kt/v about 2.5+ (minimum from hosp for HHD) I also have the slower speed because of fistula decline. I'm feeling fine after 20+ yrs D.

However, if I could have had nocturnal every other day in hosp with selfcare, I would have done that I think.

.

Once my fistula goes into full swing, I am going to re-hitup the doctor again to remind him to set me up with trainers for home hemo. I can't wait to GENERALLY escape the In center routine. Once this happens, I will be so glad. I will be able to possibly set up times to DO the dialysis and actually do it at anytime I like within reason. Yes, I will absolutely MAKE myself go to doctors appointments, like normal. That: is a given!
.....

Sure the diet may be stricter for hemo, as opposed to peritoneal dialysis, but I can handle that for what I need. Not too much problem with the diet, for some weird reason. IDK why, but it isn't as bad as I thought it would be.

Good luck to y'all, Cas

[Xplantdad]

Good to hear what others are running 

[KatieV]

Good to hear what others are running 

Hearing these makes me a little nervous...  I'm running 450 blood pump speed on a tunneled catheter!  My treatments are 25L dialysate, UF between 1.0-2.0, and time is just under 3 hours (2:57 yesterday).  I run 5 out of 7 days (usually take Tuesdays & Saturdays off).  I don't remember what my kt/v number was last month, but it was adequate. 

I wouldn't mind longer/slower treatments, but we have time constraints.  I get home from work about 6pm, try to get on dialysis by 7pm, so I can get off and go to bed, because I have to leave the house at 7:15am the next morning.  It's a bit of a vicious cycle, but SO MUCH better than in-center!  I did do Nocturnal NxStage for 8 months and it was the best; we are not in a position to do that currently.

[Xplantdad]

Katie-

My daughter is on a tunneled cath (CVC) as well.
We also do 25L dialysate.
Yesterday we had a bit more to pull off (near 2kg) so her treatment time was 2 hours and 28 minutes.
Current KT/V is 2.98.

Like you, we do my daughters dialysis in the evenings....as we get up at 4am, go to work by 5:30am, get off at 4pm, get home by 5pm, get her on the machine by 6pm and now we are done by 8:45ish to 9pm. Then repeat!

[PrimeTimer]

It is so good to see all the commitment and dedication here. Kudos to all you patients and care-partners! Especially for your positive attitude!