Questions

[Malibu]

I should have read further and posted my questions here.....sorry mod's, I am new.

Questions:

My husband is going to start dialysis (home hemo training) Mon, Nov 30th, they will do the first diaysis treatment that day. 

1.  Those of you on short daily home hemo:  when you first trained how long did they do your training hemo?  How did you feel after the first time? 

2.  Those on short daily home hemo:  Many have said they are wiped out after the 4 hr in center hemo.....is the short daily home better for you?  Do you feel better?  Are you wiped out after a treatment like the 4 hr people say they are?

3.  Eating while on the machine:  the training nurse said I can bring a 'snack only' for MM to eat while on the machine (there at the center during training), we will be there through lunch.  There is a reason people call us power grazers....we are not plump but we do like to eat and eat a full meal.  Why would the nurse say he can only have a snack at the lunch hour?

4.  We are training through Davita.....does it really take 4 weeks of 6 hour days to train?  We are fairy smart individuals and learn very quickly.

Thank you

[cookie2008]

I trained for 3 weeks, while I was training I didnt eat at the center but I eat during my treatment at home.  In center treatment was hard on me but since doing daily I feel alot better. I also have fewer restrictions with my diet.

[Malibu]

By in center treatment do you mean that you did 4 hrs 3 x per week or in center as in the training?  And how was it hard on you?  And what fewer restrictions do you have? 

...laugh...  Sorry to ask so many questions......inquiring minds want to know! :O)

[willowtreewren]

Hey, Malibu!

When we were training for home hemo (NxStage) we were there during lunch, too. They also said that hubby should not eat while on the machine, so he had a snack, but I tucked in my own packed lunch.

However, now that we are home, he regularly has a full meal while dialyzing.

I got a very bad infection in one of my fingers during training and that slowed down the whole process because I couldn't stick him for a time. We trained for 5 weeks! Whew! I consider us fairly intelligent, too. 

Anyway, we are thrilled to be home, and have been for over a year.

Aleta

[Malibu]

Thanks for the info! 

[funnygarcia]

1.   when you first trained how long did they do your training hemo?  How did you feel after the first time?
I am my husband's support person and from what he experienced..... the first run in training he felt as he normally did in center. By the end of the week, he felt a change for the better and was sad that he would have a weekend again. LOL  He did about three hour session each day, that included time learning to set up and tear down the machine each day.  Read the handbook and did the tests during the run.  I learned the basics for lab processing and how to set up a SAK for pure flow while dh was running. 


2.  is the short daily home better for you?  Do you feel better?

It's MUCH better! Better lab reports, more energy (he works full time as a teacher plus does after school programming). No washed out feeling, no edema from fluid overload after the long weekend.
His med needs are much less. He started out with two meds at  large doses to control blood pressure, now only has one med at a very small dose and even that is too much sometimes.
 
In center one only gets "adequate" treatment (just enough to stay alive) with a Kt/V of about 1

In home frequent treatment has bumped dh's KT/V to 2.6, steps above "adequate".




3.  Why would the nurse say he can only have a snack at the lunch hour?

I read about this recently. Some people have a low blood pressure response after having a meal, compound this with having low blood pressure during a dialysis run and you have the risk for crashing and aspiration of food. However, this is not true of all people. In fact, in other countries it's common to have a meal tray during in center treatment and they have less malnutrition issues (low albumin) compared to patients in the US. 

My dh frequently has meals during his treatment since he doesn't get home until after 6 pm and is starving hungry.

4.  We are training through Davita.....does it really take 4 weeks of 6 hour days to train?  We are fairy smart individuals and learn very quickly.

Not sure why it would be a 6 hour day? Ours were 3 to 4 hours each (also Davita), the nurses were scrambling everyday to push us out the door quickly for the next person to use the chair.
 
Sent home on our own after 2 weeks and 3 days.
 
He already did his own needle sticks and had established buttonholes, that takes the longest time to learn.
   
The one beef we had with our training nurse was he didn't start the training on the very first day. The only thing we did was the record keeping. We had lots of questions and wanted to know everything about the machine.. he sat in the office the whole time.

Good luck on Monday and let us know how it goes.

[dyann]

I too trained with Davita and I was allowed to eat while there I usuallyate before as I ate while driving there, but they let me have whatever I wanted and there were many people who brought in lunch with them.  I did train for 6 weeks but only 3 to 4 hrs and it would have been less weeks but I developed infections in my perma cath. I havebeenhome about two monthsdoing it by myself now and it is totally worth it to me

[Malibu]

Howdy!  We graduate tomorrow from Home Hemo training....the nurse comes to our home Tuesday to do our first at home hemo run.  It has been a long 4 weeks but the people at Davita have made it a great experience and we have actually had a great time doing it. 

I know why it takes so long to train:  Our nurse took off one day.  Our nurse had to take care of all her other business while she was training us.  She frequently got up to answer the phone in the middle of conversations; she had patients come in for 'clinic' in the middle of our training.  If it weren't for all these interruptions I feel we would have been home sooner.  BUT -- I do have to say that I think we needed the entire time there and perhaps this is worked in (?).  MM is sticking himself (no button holes, we are using graft sharp needles) and he is still extremely nervous about it.  The nurse is sending us home never the less.  We both feel we are ready though and I think we will do just fine.  All told I can't really complain.

The alarms are scarey to me, I fear what will happen when we have one at home.  We are working on these issues though by frequently talking about the course of action we will take and going over the alarms chart.  We don't have many at training and the nurse said that our treatments there are indicative of what it will be like at home.  The stick is the worst part and what we have the worst time with.

Today we (apparently) had a bad cartridge.  Arterial pressure was 293 and even after repositioning the needle and performing all the other checks for the alarm it was still up there.  We attached the A and V lines to the saline bag so we could see what the matter was with the needle and guess what the pressure was in teh saline bag?  293.  Voilaaaa!

So for others who want ot know here are the answers to my own questions after 4 weeks of training;

1  4 weeks.  4 - 5 hrs a day.  As soon as he is off the machine we can go.
2  MM feels so much better.  After the first day he could taste food completely again.  He did not realize that he could not taste!
3  He eats basically a whole meal while on the machine.  They don't say anything.
4  The nurse will send you home when she thinks you are ready.

[HubbysPartner]

I am the caregiver to my husband.  We started short daily hemo training about 2 months ago.  We were training at the center for about a week and a half and then we trained at home for about 3 weeks.  In center it was about 5 - 6 hours, but that was because we didn't usually get on the machine right away.  Our trainer was constantly interrupted so we had a lot of waiting time.  When we got home, it was much better; the setup, dialysis time, disconnect and clean up was usually about 3 1/2 hours. 

We went right to NxStage when my husband started dialysis; he was never in center; but he feels fine after treatment and he is feeling much better as a whole.  He has more energy and his appetite has come back.

As far as eating while on D, we were told that he shouldn't eat a full meal because it diverts blood to the stomach which can cause his pressure to drop.  We didn't eat at all in center, even though we were there over dinner.  He does eat a snack at home while on treatment and it doesn't seem to cause him any problems.  He doesn't drink much though.

We are glad we started right away with short daily hemo.  I don't think my husband would be able to keep working full time if he went in center. 

[Malibu]

I too didn't think my hubby could work doing in center. 

I should mention here that we were under the impression that Short Daily Hemo meant SHORT, treatments of 2 hrs or less.  That is not the case.  Our training nurse said everyone thinks that when they start.  Our treatments are 2:25 to 3 hours depending on how much fluid we have to remove.

[willowtreewren]

Malibu, you mentioned that you didn't get many alarms while you were training ad you are concerned about handling them at home.

Believe me, when we got alarms at first I was very tense. Now it's pretty much, "oh, what now?"

We still don't get many alarms, and they are mostly when we are harried or very tired. I love our NxStage.

Aleta

[Malibu]

Thanks Aleta.  I know I'm going to freak out when we get an alarm!!!  :O)  The training dialysis nurse called this morning because we haven't called her with any questions.  She knows we are doing the treatments because we are sending in the treatment sheets.  Fingers crossed that alarms will be far and few between.  One thing I think is good is MM sets up the machine and I do a verification check afterword while I am waiting for the 3-5 mins for heparin.  We probably all do this.  I found today that MM hadn't unhooked waist line from the saline bag!  All I could think of was the pictures someone posted when they forgot to do that.  I laughed out loud!

[willowtreewren]

When we are traveling or something unusual is going on I sometimes forget to put in the parameters for the treatment. So now when I see #6 alarm it's like... sheesh! not again!

Last night the PurFlow was alarming when we got home from work ... conductivity test failed. Humph. Clamp the da**ed line again and try over.

You really do get blase about the alarms... that is until you get one you just can't clear. Tech support is always just a call away, and if all else fails, just stop the treatment and try again the next day.

 

Being home is empowering.

Aleta