First treatment on my own at home. SWEET!

[swramsay]

Pretty cool. I'm sitting here writing to you all as I dialyze myself at home! This is GREAT! The nurse (who is absolutely incredible) came home with  me yesterday for my first run in my home. Today was the first day without her. Went fine. I double checked everything and went slow. My husband watched but I did everything myself. It's good to know that I can. It was nice to go about my day today, go to the gym and then dialyze at home when I was ready. I even hopped in the shower while it was priming. SWEET. I had 2 weeks of training. Still a little unsure of some things but as long as I have the great documentation I've been given to fall back on, I feel comfortable. Soon it will be habit.

[David13]

That is absolutely wonderful!

Keep up the great work!   

[twirl]

do you stick yourself
how long per treatment do you run
and how many days a week
I am proud of you, you are doing something I would be afraid to do.
How often do you go see your nep doc?

[petey]

swramsay --
Hold on, girl!  It gets BETTER and BETTER the longer you do home hemo (Marvin's been on HHD for 20 months).  At first, we read the "book" over and over again when setting up.  I made huge posters and hung on the wall (steps for priming, steps for runs and disconnects, common alarms, etc.).  I made diagrams and photocopied pictures to hang on the wall. 

We never look at the book or the posters any more, and when there's an alarm (rare for us now), I have to dig around to find that damn book.  It's become just a routine part of our daily lives.  The flexibility it affords us is wonderful -- absolutely wonderful.  The benefits to Marvin's health (great labs now, more fluid allowed now, etc.) are a major plus, too.

Marvin's on the machine now -- just got on because we had a full day today.  I'm in the den playing on the computer, and Marvin's in his "clinic" (used to be a spare bedroom) surfing the net on his laptop.  He has a soda beside him (not allowed when he was in-center), and he has on his "sleep" pants and a tee shirt.  His tv is on the sports channel, and he stays so busy on the lap top and checking the scores of the ballgames on tv that he says his D time passes quickly.  It just doesn't get any better than this ... well, we still want nocturnal home hemo, but that's a different story.

Good luck to you.  Enjoy!

[Sunny]

wonderful news. Good for you. Are you on NxStage? Tell us everything about how it worked. Thanks for the info.

[Zach]

That's wonderful!

[G-Ma]

 

[pelagia]

fantabulous!

[swramsay]

do you stick yourself
how long per treatment do you run
and how many days a week
How often do you go see your nep doc?

Twirl - I do the needles myself. I have figured out a way to tie my own tourniquet which probably helps the stabilize the fistula. I use the numbing cream first (just a little dab on the spots I plan to cannulate). I gave myself a little heparin and epo. My platelets are going back down again. I hope they stop so that I  won't be forced to stop the heparin and go back to flushes. I'd rather not have to flushes myself all the time. Right now I plan on doing 6 days/week and for now I go only 2 hours 20 min or so. I may do 7 days and I've already talked to my nurse about upping the time to 3 hours. My labs are still a little off and I feel a bit toxic at times so I know I need more time on the machine. My goal is nocturnal home eventually (if I get the platelet problem corrected). I see my neph once a month at his office and I will see my home hemo nurse once a month in her office. No problem.

wonderful news. Good for you. Are you on NxStage? Tell us everything about how it worked. Thanks for the info.

I am using the nXStage. I have it set up in my office. I think we need to program a couple of things like adding the prime and rinseback so I don't come off above my dry weight. There is a little tweak that needs to be done with the calculation of the dialysate. It says I use 14.6 liters when the 15 liter bags are bone dry at the end. We'll get it right. I could have stayed in the training for longer if I wanted but I'm doing fine taking it slowly. AND I didn't want to have to go through another long weekend without dialysis! I did have to give myself some saline today because I moved funny and my stomach began to cramp. Ugh. Happy to have remembered that from the training. Fortunately it worked.

 

[Sluff]

Good for you. I know many people on Nxstage having that same feeling. 

[Dan.Larrabee]

Your right Sluff, I have the same feeling.

Swramsay I do remember that excitement of being home. Congratiulations!!!! It will get easier every day. I have only been on NxStage at home for three months now. Sometimes my wife sets up the machine and if she does not finish, I can tell where she left off by looking at it, no notes. It really does become second nature.

Now if you get brave, the system settings are in the back of the NxStage manual. You can change settings that will help with your dialysate fluid issue. If not, call NxStage tech support and they will walk you through it. I have only called them once, but they were very helpful.

It's great to have another NxStage home hemo club member. Like you, my next step is for nocturnal, sorry, “extended therapy”.  In most places it’s a struggle to get approved. Hope you don’t have any of the issues. If you do, don’t give up its still the best therapy.

[monrein]

Good stuff.  Taking back any control we can is major in my mind.  I used to stick myself even at the clinic and never bothered with the cream.  I found that the act of concentrating on the cannulating made me oblivious to any pain.  Good for you girl.   

[jbeany]

Ahh, I'm jealous - I miss my NxStage dreadfully!  It does, indeed, get to be routine, and you won't need the books except for the occasional alarm.  It's so nice to do it on your own schedule, isn't it?  Are you going to start using the pureflow?  I thought that made things even easier.  Have you considered doing more L's per day instead of more days?  I was doing a 5 day a week schedule - 3 days at 20 L, then 2 days at 25 L.  I felt fabulous - tons of energy, and with only one day off at a time, I could still drink a lot more water than I can with in-center.  Don't forget to check out the tips for NxStage post on here - lots of good ideas to make things run even better!

[cherpep]

Good for you!!!  I know that for me, deciding to do home hemo was the best decision I ever made.  I get more time with my family - control over the TV - can surf the internet - do it a couple of hours earlier or later at my discretioin - I know how clean the area is.  I especially love having control over my own care.  We were real nervous in the beginning, but like others said - it's routine now.  It's just like doing dishes, just one of those things that we have to do.

[swramsay]

Ahh, I'm jealous - I miss my NxStage dreadfully! 

jbeany, why don't you have the NxStage anymore? I just got my supplies delivered yesterday so I will set up the pureflow today to use tomorrow. Yes, I have talked with my nurse to do more L's/day. I'm still having problems with the machine settings so as soon as I get that squared away I'll be able to start the change.

Had lots of alarms the whole run yesterday so I was a bit flustered. Ended up losing my blood because I couldn't rinse it back and the manual rinseback wouldn't budge. Got red 11 and didn't know how to remedy it. I think the problem began with the rinseback when I didn't fully unclamp one of the red clamps and it alarmed air in the arterial. I unclamped the clamp and reset several times but I never got rid of the alarm and the flush never happened. By the time I figured out the manual flush, I was probably clotted. Oh well. Live and learn. My arterial pressure was acting up the entire 2 hours. If I sat down the pressure was too high but as soon as I stood up (with my arm in the exact same position) the pressure was good. Must have been the amount of pressure needed to get the blood up the tubing while sitting. Hopefully today will be smooth!

I did meet with my vascular surgeon today to see if I had a stenosis. I have a slight one but she said to leave it alone unless it causes problems. My hand circulation is bad and if the correct the stenosis, it could cause even more problems with my hand circulation. So, hopefully all will remain well.

I am glad to have this forum. It helps to know there are people out there going through the same things.

[cherpep]

The dreaded red 11.  If we get an error - it's that one.  It usually comes near or at the end of the treatment.  Sometimes, we take a syringe of saline, attach it to the port of the actual filter (cylinder), and inject the saline into the filter to try and flush it.  Many times, this clears it up.  If we meet a lot of resistance, we know there's a clot or something so we leave it alone.  But many times, using that syringe and pulling fluid in & out of that filter does the trick.  Hope things go smoother for you!

[paul.karen]

Well i hope the bugs all get worked out fast.
I give you and everyone on nexstage or doing homehemo a big hand.

To me it all sounds so complicated, but i guess once i start myself it will become second nature.

Hope them alarms stop alarming.
Continued success Swarmsay

[Wallyz]

Ahh, I'm jealous - I miss my NxStage dreadfully! 

jbeany, why don't you have the NxStage anymore? I just got my supplies delivered yesterday so I will set up the pureflow today to use tomorrow. Yes, I have talked with my nurse to do more L's/day. I'm still having problems with the machine settings so as soon as I get that squared away I'll be able to start the change.

Had lots of alarms the whole run yesterday so I was a bit flustered. Ended up losing my blood because I couldn't rinse it back and the manual rinseback wouldn't budge. Got red 11 and didn't know how to remedy it. I think the problem began with the rinseback when I didn't fully unclamp one of the red clamps and it alarmed air in the arterial. I unclamped the clamp and reset several times but I never got rid of the alarm and the flush never happened. By the time I figured out the manual flush, I was probably clotted. Oh well. Live and learn. My arterial pressure was acting up the entire 2 hours. If I sat down the pressure was too high but as soon as I stood up (with my arm in the exact same position) the pressure was good. Must have been the amount of pressure needed to get the blood up the tubing while sitting. Hopefully today will be smooth!

I did meet with my vascular surgeon today to see if I had a stenosis. I have a slight one but she said to leave it alone unless it causes problems. My hand circulation is bad and if the correct the stenosis, it could cause even more problems with my hand circulation. So, hopefully all will remain well.

I am glad to have this forum. It helps to know there are people out there going through the same things.

Once there is air in the line yer done unless it can  be bled out.  (hah! Bleeding air out of  a line full of blood)

On Arterial pressure, is there any way to get the level of the machine about the level of the fistula?  If the machine is sitting high, or I am sitting low, the arterial pressure increases.

[jbeany]

 
So, how's it going after the first month?  Getting into the routine?

[swramsay]

Sorry JBeany, I'm not getting notifications on the majority of posts for some reason. I have it set to notify me but it's not working.

Yes...it's becoming routine.  The alarms are fewer and they don't scare me any more. The time flies by. I am looking forward to spreading my wings and traveling with the machine. Fly the coupe. We are planning a trip to Disney World and the thought of dialyzing in the room when I am ready is fantastic! I am contemplating starting buttonholes soon.

thanks for asking.