Starting Nx training next week . . .

[chiawana]

I've been MIA here for a couple of weeks, and I'll admit I've been depressed. My husband and I will be starting training next week for home dialysis, and it's going to be brutal. I'm not worried about learning the machine or the procedures; I am stressing about the fact that I will be putting in 11-hour days for four weeks straight . . . we have 3 hours of training then I have to go to work for 8 hours. I know it's only for a month (or less, hopefully) but I am dreading it. There will be no time for yard work, and I'm wondering when will I even shower and do anything to my hair? Laundry? We go in at 7:00 and I won't be home from work until almost 7:30 every night. I spend 8 hours on my feet all day. I know I'm whining. But I suspect some of you have been there and will understand why I'm so upset.

The nurse came over last week and checked over our facilities. I guess the plumber will be coming over one of these days. I know my husband will be so much happier doing it here at home, as he's had some issues with people at the dialysis center. The nurse tells us that he should feel much better and that it could even improve his sleep. That is a huge concern for us, as he sleeps very poorly and rarely enough.

I'm sort of rambling here, but that's what we're looking at soon. I've asked for some time off during the training period; I have a lot of accumulated time off so if I could have some days it would save my sanity. We could go to training and then go fishing. My husband is wanting to get out and do more things instead of staying home so much. That's fine with me, but we also have a yard to take care of, and he wants to start a garden. I'm glad he's feeling optimistic and wanting to do so much; sometimes he's got more ambition than I can deal with, lol.

We'll get through it one way or the other.

[willowtreewren]

Chiawana,

You need to do a reality check here for a minute.....

Once the training is complete, you will be following this schedule at home every day.

While we were doing NxStage at home we BOTH worked a normal 10-hour day, getting off at 5:30 PM. Then we set up the machine and did dialysis at night, every night. We divided the set up tasks and I would get dinner going during part of that routine. Then once my husband was on and running, I would serve him dinner in the chair, while I ate nearby. We did this night after night for YEARS!

Just as soon as he was finished with his run, we would knock down the machine and tumble into bed so we could get up and be at work by 7:15 the next morning. There were no movies, no running errands during the week, no eating out.....

Any "recreation" had to be fit into the short weekends.

It sounds like I am complaining. I'm not. I'm just telling you the way it was for us. On the plus side, we could load the machine up and take it with us when we visited our daughter. We could take the machine camping when we had a long weekend. And it kept my husband healthy.

I just think you need to remember that the weeks of training are only the start. The long hours are going to continue. There are going to be some big boo-boos that will take time to clean-up when you are bone tired. It is a big commitment. If you are dreading it now, I'm worried about how you will manage once training is over.

 

Aleta

[cattlekid]

I can second what Aleta is saying.  Here's a normal day for me with NxStage:

6:00 AM to 7:30 AM = get up, get to work
7:30 to 4:30 = work
4:30 to 5:30 = commute home
5:30 to 7:00 = make dinner, clean up kitchen, set up machine
7:00 to 10:00 = treatment
10:00 to 11:00 = tear down, clean up, get house ready for next day

The good news is that there are two days a week where I don't have to do treatment and I can arrange those to fit my schedule.  Usually, I run Sunday through Tuesday, take Wednesdays off and then run Thurs and Friday and take off Saturday.  I always try to leave one full weekend day without treatment as many weeks as possible. 

I'm starting to get run down myself with all of the commitments that can't be met with doing this treatment modality.  But I would definitely not go back in center for all of the tea in China.

[chiawana]

Thanks for the reality check. I have thought about what it will be like once we are doing it here at home, and I foresee much the same schedule as you've both described. But at least we'll be home for the treatment, and we can watch TV or, as my husband has said, do some writing together. This may be the thing that is the catalyst for getting us motivated to do some writing, which we both want to do but continue to find excuses not to. I work full time but he does not; he works two days a week so he will have time to enjoy feeling better. That's going to make this all worthwhile.

[willowtreewren]

 

I have to say that the "machine time" was really quality time for us. After we ate, we would do many different things together.

 

Aleta

[lmunchkin]

I agree with all above. But as overwhelming as it all is, Im so glad that we chose this route.  If we were in-center, I would not be able to work like I do!  I would have to go to center and pick him up feeling Drained and staggering like a drunk!  He may or may not be off the machine yet for whatever reason! Then go back to work, worrying about him the whole time.  Nope, not me!  We started out doing PD on him at home, then went in-center and quickly trained for Hemo at home!  In-center was just not for us!!!

I don't want you to be mislead Chia!  It is hard as hell at first.  You are wise to take some time off from work to do this for him.  God Bless you for that!  But it will be overwhelming at first, but that being said, it will be so worth it in the long run.  He will feel better and you will see that after a while.  If he could do most of it himself, I think that would help you tremendously!  Just try it, Chia!  If it is not for you then go to in-center.  It is not for everyone, but as you can tell by this site, more and more people are learning it and doing quite well.  It takes commitment, and I do believe you can do this, but don't rush it!  Take your time and learn it.  You will be so glad that you did.  Another thing, they will not let you go home, till YOU are comfortable with it.

Good luck and let us know how it is going, Chia.  And as usual, we are here if you need us.

God Bless,
lmunchkin

[chiawana]

We're about a week and a half into the training. Whew! We are definitely going to make it, and we are not sorry that we're doing it. It's been a real challenge for both of us, but today we got my husband's first lab test results since he started dialyzing daily, and they were excellent. Right there, it tells me this is the right thing. We saw a friend of his this afternoon and was shocked at how much better he looks. He does feel better, though he's still having his poor sleep issues, and he pulled a muscle in his back yesterday, so he's been hurting.

Our training nurse is just awesome. She is a kind, caring person with a great sense of humor. She really cares so much about all her patients, and she's just so fabulous in every way. She says we are ahead of the training materials and is pleased with how we're catching on to things. I inserted the needles into hubby's buttonholes for the first time yesterday, and she said I did a great job. I was nervous, of course, because she'd been saying how great his buttonholes are and how easy they were to use, and I was thinking "yeah, but you're a nurse and I'm NOT!" Turns out, it is pretty easy. I've quickly learned that the intimidating thing is not the needles at all -- it's learning how everything hooks up, what goes where and when, what connects to what and WHY, when to clamp or unclamp, etc. That is far more complicated to me than anything to do with needles. It's all starting to come together, though. She has two machines, so hubby and I get to practice setting up at the same time on our own machine. So far, I've set up well enough and did the snap-and-tap so that none of the alarms have gone off. Of course, she's monitoring everything so it's kind of a no-brainer right now.

The last several days have been five hours each; the first two I worked seven hours after we were done. Sure am glad I took off today and tomorrow. I also have three days off next week.  She is shooting for us to be home with the equipment by the 27th, since that is also a day off for me. I suspect we will be "ready" sooner, but more practice is not going to upset me one bit.

She is going to set up some sort of group or meetup for Nxstage users in the Boise area, so we can all get to know each other and sort of be a support system. We think that's a great idea and will be anxious to participate.

Tomorrow we'll be learning more about PureFlow ......

[chiawana]

Training is still going well for us, though my husband has had a couple of bad days. He does not sleep well, and when he's not rested he has some real issues during the treatment. Yesterday he vomited and his blood pressure dropped. The nurse said it's probably a vagus nerve issue, and I think she's right. A couple of years ago he wound up in the hospital because of a vagal nerve reaction; blood sugar and blood pressure dropped, and then they found out he had pancreatitis. I'm really going to have to be on top of this when we're at home. We will be doing the treatments in the evenings, though, and I think that will make it much better for him. Early mornings really do not work for him at all.

I'm getting more at ease with the cannulation, but yesterday when I was taking him off I didn't get the gauze over the buttonhole quickly enough and blood literally spurted down his arm. It freaked me out but he kept me calm. The nurse wasn't in the room with us at the time, but we handled it. She's proud of the way we're getting more and more independent. I almost cried but I sucked it up. Oh, on Monday when I was cannulating him I inserted the needle but got no blood. I'm like "there's no blood! What happened!?" My husband calmly told me to pull back on the needle a little and sure enough it started to work. The nurse was impressed at how he knew what to do and how we managed to sort it out. We had a bad day Monday, lots of alarms on the machine. I had to go to work so I didn't get to take him off, but they told me that when the nurse took him off, she forgot to close a clamp and so got a bit of a bloodbath, so I didn't feel so bad anymore.

I do worry about infection so I'm going to be totally anal when we are at home. I took an online course on preventing dialysis infections from the CDC; it's aimed at in-center dialysis but I figured it could give me some hints, too.

I have the rest of this week off, and also next Monday and Tuesday, so I'll get to practice taking him off. The more practice I get, the better. She sent us home with a box of supplies and we've put them on a book case in the room where we'll be dialyzing him. They'll all be right there where we can see if we're getting low on anything. Until I get some idea of which things we'll use up first, I want to be able to check inventory as easily as possible.

[conchman]

I would look for any and all opportunities for getting help, by that I mean, we tend to take a lot on ourselves.  At least in the adjustment period hire the local kid to mow and pick a few weeds.  Ask a neighbor's kid to work around the house.  Vaccuam, clean whatever.  An extra few hours a week will seem golden... I am likely doing to much, full time job, part time business and I still try and find time to help around the house, make dinner once and a while etc...  Granted I have not start "D" yet, but my wife and I have already said we will look for those opportuites and downsize to a townhouse/condo (much eaiser to maintain) when that time arrives, likely 3-5 years.

Good Luck...

[boswife]

   your doing great and getting lots of good experience!  It's s quite a trip isnt it    We'r 1 1/2 yrs into being home and sooooooooo glad we stuck it out.  I was a scardie cat so it was tough, but all soooooooo good now.  Keep writing, its really fun to read and offers lots of encouragement to others thinking about doing it...   

[chiawana]

Thanks for the kind words 

On Friday we did the entire treatment on our own; I asked the nurse to come in once or twice to make sure something was right, but each time it was. She said the hardest thing for her to do is be in the next room and listen to us talking about what we are doing and not come in to help us, lol. But we did pretty well, I think. Between the two of us, I think we've almost got it whipped. Of course there will be the alarms we'll have to sort out, and unforeseen things like clamps that didn't get shut (or opened), etc. But at least we'll have the steps down and can deal with the issues as they come up.

We got a nice recliner yesterday, and a good floor lamp so I'll have ample light for when I'm cannulating him. We found a different place to store some of the supplies that's still convenient but a little out of our way.  We still need to find a floor mat of some kind to protect our wood floor. I guess the plumber and electrician will be out soon, too.  Eek, it's really happening!

[boswife]

we have hard wood too and we went to home depo and got a sheet 20 x 20 lanolium that went under our 'set up'.  We kept it there for a few months but then took it out as we havent needed it.........  so far    I have a neat light too that i can manipulate where i need it for  cannulating. Also, what we got for convience is a wonderful rubbermaid utility cart that rolls so wonderfully.  we have all our daily supplies on it and store the rest in the spare room.  I love our set up.. on the cart i also take a 3 inch strip of the little bubble wrap and put one pk of cannulating needles, 3 square pads, 3 pks of iodine, 3 pks of alcohal and wrap that , , ,, and then i take 1/2 of a paper towle and put 2 non needle syrange, and 2 needle syrange and 1 pack of alcohol and wrap up.  I do 4 pks of each and have them seperate on our 'cart' so when hubby gets up, he puts the paper towle pk on top of the machine ready for me, and the bubble wrap pk on our canulating table.   Then when snap and tap.. i wrip the paper towle piece in 1/2 and use the first half for the pigtail water catch, and the other for the white connector bleed.  lol...............  any way, babble on lol...  You'll get your rythem down and it's all good.  But, the 'cart' is my best suggestion to have.  then you can push it away if your in a room you'ld rather not have too much stuff.  I also have my own rolly table for my paperwork etc...lol

[chiawana]

Thanks for everyone's hints and suggestions. Boswife, we are actually getting one of those little carts from our nurse. We're using it at the training facility right now, it has our working supplies in it, and we'll bring it home to use here. I like your idea of having the supplies made up ahead of time, too. I want to get some kind of little table, even a TV tray, that we can use just during treatment and fold up and stick behind a chair when we're done. Still haven't got the floor mat yet.  A big sheet of linoleum's not a bad idea; if the other mats are too expensive we might go that route. It doesn't have to be fancy; in fact I'd rather not buy anything too nice. If blood spills on it, I'll have to clean it up with bleach and probably ruin the finish anyway, lol.

Less than a week before we start here at home. More than just a little overwhelmed! Trying to think of something nice we can do for our nurse, and I'd like to do something for my co-workers as well, because they have all been so flexible with me on my schedule and the days I took off. I am really lucky to work with such good people who were willing to work with me during this training time.

[boswife]

it's so crazy overwhelming at first. And then later, you'll wonder why..hehe   most settle quite soon, but not me. It took me FIVE long LONG months to settle my fears.  We all have our burdens, and mine is anxiety issues that were really hard to overcome.  But we did, and it's great now.  I wish you smooth sailing with it all .  Your going to be just fine

[amanda100wilson]

You an get cheap rubber based utility mats from  Target  that are washable and don't look too bad.  I just have one but  a couple would probably be enough for good measure.  They don't look too bad either.