Working and NxStage and Life....how to balance?

[cattlekid]

So I started NxStage hoping that it would restore some balance in my life.  Three months in, it seems like all I do is go to work, do dialysis and sleep. 

Anyone else working full time and doing NxStage?  How do you get everything done in a day and still have some time for fun, not to mention chores, time with friends/family and maybe God forbid, even some exercise?

[lmunchkin]

I do!  But not as the one recieving the dialysis.  I work, come home to put hubby on the machine. But Cattlekid, if its not for you, then go back.  Nxstage is not for everybody.  We like it simply because of HOME!  If we lived in a D. center, then we would do it there.  It has always been about home for us, and the fact that I can do him longer and more frequent than in-center.

You will always be tied to "something" with Kidney disease regardless. Do I like it, No, would prefer the old days when he didnt have this damn disease, but he has it, and we deal with it the best way possible!  I hope I have not lead you to believe it was much easier, because it isn't easy whether at home or in-center.  We have adjusted to NxStage very well, but it is still time consuming any way you look at it.  We just choose to do Hemo at home, but it is a choice, and if it seems to have been more of a henderance for you Cattlekid, then please, do what is best for you!  Im sorry if I led some to believe that this is a Wonderful thing, cause that is not my intent.  What is wonderful for us, may not work for others.

I tend to push this NxStage alot.  I still believe (for us) its the best modality going outside Transplant & Nocturnal. Please, don't take that to mean its fantastic for all, cause it isnt!

Sorry Kid, I was hoping you could see the advantages or doing it in your own time frame, vs In-center set times.

God Bless,
lmunchkin
 

P.S. you could stop work and draw disability.  My hubby stopped work last year after working 7 years with dialysis.  He just couldnt do it anymore, thus gave it up.  I was amazed how long he worked with this disease and very proud of his fight.  But was relieved when he stopped.  I worried all the time about him at work, so now he is home, and doing very well!

[cattlekid]

I talked it over with my neph and my NxStage nurse and we all agreed that there is no way I could go back in-center.  In-center was draining the life out of me.  I was useless for 8-10 hours after each in-center treatment and I was having trouble with my labs (phos and K).  With NxStage, I at least don't have the downtime after each treatment. 

Unfortunately, disability is not something that I can do.  I would only get 70% pay from LTD from work, and I don't think that I could even qualify for LTD.  Without me working fulltime at 100% pay, we'll lose our house as DH's salary is very low.

[lmunchkin]

Yea, I understand the financial stress it can put on the family.  You sound like the reverse of me & J.  He had the paying job and I don't get paid a whole lot. I wanted him to continue as long as he could so we would have company Insurance, but having said that, once he stopped working period, he filed social Security Disability.  He already had Medicare even when he worked.  So when he gave job up, he called SSI office to set up application over phone.  We understood though, that it would be 6months before receiving 1st check.  It was not retroactive either and that hurt us alot back then.

Thank God, we made it threw that, and now we are getting by okay!  But work was just stressing him too much.  Im glad he stopped.  I don't see how he did it all them years!
 
I really don't know what to say or do Kid, that would make this any better for you. Its life, and its exhausting!

Hang in there, girl! Make it better for yourself and no one else!

lmunchkin
 

[cdwbrooklyn]

It really makes me upset when people try to give advise and they are not on D.  Sorry, don’t mean to be ruled.   It makes my skin crowd. That said, the advantage of Nxstage is to gain back some of your freedom.  Also it is better that your blood is clean everyday since your kidneys are not function correctly.  Yes, it takes time especially if you work full time as me.  However, I enjoy getting up in the morning and going to work feeling happy, healthy and close to normal due to my Nxstage privilege.    I’m glad that I can do it at home although it takes up most of my time in the evening.  However, I do have Saturdays and all day Sundays to enjoy life as I go out and do me (party hard sort of speak).  Don’t ever feel you are wasting your time because you choose to take good care of yourself.  There are so many benefits to doing it at home.  You will get use to it and it will become your everyday routine.  Also, if you feel like doing something after work, do it.  So what you get on a little late, you deserve to enjoy yourself sometimes if not all.     

Sorry Imunchkin, please don’t take it personal.   

[cattlekid]

Thanks for your reply!  I would love to get on the machine later - we sometimes do on Friday or Saturday nights b/c DH doesn't have to be up for work in the morning on the weekends.  He likes to be in bed by 10:30 on weekdays which means I have to get on the machine no later than 7:30.  Doesn't give a lot of time for extras during the week for sure. 

Here's another question - does anyone here on NxStage have a care partner other than their spouse?  I am thinking that if I could find a second care partner, it would take some of the burden off DH.  Now, he can't really do anything on the weekdays or then we have to do D on both weekend days.  And he might start working Monday nights which would mean a day off during the week but I would have to do two weekend days (counting Friday, Sat. and Sunday). 

It really makes me upset when people try to give advise and they are not on D.  Sorry, don’t mean to be ruled.   It makes my skin crowd. That said, the advantage of Nxstage is to gain back some of your freedom.  Also it is better that your blood is clean everyday since your kidneys are not function correctly.  Yes, it takes time especially if you work full time as me.  However, I enjoy getting up in the morning and going to work feeling happy, healthy and close to normal due to my Nxstage privilege.    I’m glad that I can do it at home although it takes up most of my time in the evening.  However, I do have Saturdays and all day Sundays to enjoy life as I go out and do me (party hard sort of speak).  Don’t ever feel you are wasting your time because you choose to take good care of yourself.  There are so many benefits to doing it at home.  You will get use to it and it will become your everyday routine.  Also, if you feel like doing something after work, do it.  So what you get on a little late, you deserve to enjoy yourself sometimes if not all.     

Sorry Imunchkin, please don’t take it personal.   

[Bill Peckham]

For me it's nocturnal extended. Without extended I didn't think I could keep it going the way I am.

NxStage is uniquely challenging, time wise. NxStage's approach to dialysis values dialysate over time. I had been using the Aksys PHD 3hr/treatment 6x/week for five years when I switched to the System One, the time challenge doing short with NxStage is significant.

Extended makes all the time issues moot. And with the higher dose I can do the more work/chore/party friendly schedule of two days on , one day off. When I switched to extended in January 2008 I had my evenings free seven days a week for the first time in over 17 years. I started blogging and spending more time in bars, and I could go out for dinner after work, dialyze that night and be ready to work at 8 the next day. What a concept.

[cdwbrooklyn]

Hi Bill,

I'm confused; are you saying you rather do short term than long term?  Not sure what you mean.

[cdwbrooklyn]

Hi Cattlekid,
If you are not afraid, you can do it yourself.  It’s really not that hard at all once you get the hang of it.  My daughter is my caretaker; however, she does not take any part in my treatments unless I really need her and that’s once in the blue moon.  However, she is in the other room just in case an emergency occurs.  I do everything on my own that’s why I am able to get on late sometimes whereas I can enjoy a little bit of my evenings or hang out with friends.  I get on between 9pm – 10pm.  I’m done at 12am – 1am.  I’m not the one to wait for someone to come and put me on; otherwise, I will be on their time and not mind.  So if you are not afraid to try, try to do it yourself and use DH only if you really need him.  It will help a lot and you will have some more time to enjoy your evenings.   

[cattlekid]

Thanks for the insight!  Do you pull your own needles?  If so, how do you do it?  Right now, that's the only thing that I need DH for.  I put my own needles in and do everything else on my own.  The only thing he does is pull the needles.  I'm not sure how I could do that one handed and not get blood all over the place. 

FWIW, my fistula is in my upper left arm between my elbow and shoulder.

Hi Cattlekid,
If you are not afraid, you can do it yourself.  It’s really not that hard at all once you get the hang of it.  My daughter is my caretaker; however, she does not take any part in my treatments unless I really need her and that’s once in the blue moon.  However, she is in the other room just in case an emergency occurs.  I do everything on my own that’s why I am able to get on late sometimes whereas I can enjoy a little bit of my evenings or hang out with friends.  I get on between 9pm – 10pm.  I’m done at 12am – 1am.  I’m not the one to wait for someone to come and put me on; otherwise, I will be on their time and not mind.  So if you are not afraid to try, try to do it yourself and use DH only if you really need him.  It will help a lot and you will have some more time to enjoy your evenings.   

[amanda100wilson]

This is how I do it.  I have an upper arm fistula.  Staring with the venous, I remove all but one piece of tape.  Then  I apply a strip of taoe to one side of those little gauze balls  (or,you cpuld use regular gauze folded) making sure that it stays in the packet so as not to contaminate the side that will go against the buttonhole.  I then carefully remove the tape, using my thumb to hold the needle in place down the middle part of the plastic that comprise the wings to prevent the needle from being dislodged as I remove the tape.  Having removed the tape, I loosely apply the gauze ball and tape that I have previously prepared, over the buttonhole site.  Using my thumb to apply light pressure, with the tube just below the needle between my index and middle finger and my palm upward, I pull on the tube with those two fingers until the neddle is out.  As it comrs,out I increase the pressure with my thumb.  I drop the line and needle (I have a blue chuck there ready to catch it) and then move my those two fingers in position to apply pressure and take over the job from my thumb which I then release. 

If you go to Home Dialyzers United, and scroll down the page, towards the bottom left hand side, you can click on Sharon Whipkey pulling forearm needles. 

Another method, if your lnes are long enough, it to pull using the same side hand as your access is on, instead of pulling up by the needle.  I have tried this and for me, I prefer the method that I have described. 

I hastento add, that I have only done this with blunts and not sharps.  I think for those, on the odd occasion that I may need to use one, I will continue to have my husband's assistance for oulling those.  Hope that this helps.  Maybe I will try and get my son to videotape me pulling them then I can put thenlink on here.

[cdwbrooklyn]

Thanks Amanda100….,
Cattlekid, yes I pull my own needles my button holes are on the lower part of my arm.   First I remove the tape from one button hole and pull the needle slightly out just a little (not to much) then put a bandage over the button hole and needle part that is half out.  Then I put a gauge (4X4 one piece, not two) over the bandage folded and hold with my first finger firmly so the blood don’t leak out of the bandage then I use my thumb and middle finger to take the needle out slowly.  When the needle is fully out, I lean over to drop the needle in the sharp container while holding the gauge with my first finger.  After that I use all my fingers to hold the gauge a little tighter for about 10 minutes.  The bleeding stops and I throw the gauge in the garbage.  Mostly, the bandage has very little blood on it.  However, on occasion, when I’m distracted by something on TV, the bandage is cover with blood. 

See if these instructions work for you:

1)   Remove the tape from your button hole.  Be careful that the needle don’t move (most likely it shouldn’t)
2)   Slightly pull the need out just a little bit somewhat half way not all (be careful not to pull it out to far because the needle will come out on it’s own)
3)   Put a bandage over the button hole and the needle part that’s slight out. (this should hold the needle until you are ready to pull it out)
4)   Fold a 4x4 gauge (just use one piece, not both) over the bandage with a little pressure so the blood doesn’t shoot out under the bandage. (The bandage prevents the blood from shooting to the ceiling but it will shoot down your arm under the bandage if pressure is not applied.)
5)   Hold the gauge with your first finger (the finger after the thumb) with enough pressure to remove the needle. 
6)   Slowly remove the needle with your thumb and middle finger making sure you are hold the gauge firmly so the blood don’t run down you arm.  If you can’t reach the sharp container, drop the needle on the chuck or floor and attend to it when you are done holding. 
7)   Now use all your fingers to hold the button hole a little tighter for 10 minutes until the bleeding stops.
Use this same method for the second button hole. As you do it a lot, it will become very easy.

Let me know if this works. 


 

 

[Bill Peckham]

Hi Bill,

I'm confused; are you saying you rather do short term than long term?  Not sure what you mean.

Extended = 7-8 hour treatments, while I sleep

[lmunchkin]

Sorry Imunchkin, please don’t take it personal.   

I tried to PM you, but you have me blocked, but I was telling you that nothing personal taken!  You are not the only one with this disease that feels that way.

God Bless,
lmunchkin
 

[cdwbrooklyn]

Not sure what's PM so didn't know you were blocked.  Sorry.

[cdwbrooklyn]

I was just thinking and wanted to clear something up.  First and foremost, I do not have a kidney disease.  I was born a healthy baby.  I came into kidney failure because I didn’t take care of my blood pressure when it was high.  I was in my early 30ths when the doctor told me my blood pressure was high.  I totally ignored the seriousness that high blood pressure can cause.  After, not taking my blood pressure bills for almost a year, my blood pressure got extremely out of control and I lost my eye sight for about two months.  One night I couldn’t breath and almost had a stroke.  My family rushed me to the hospital and the doctors saw my blood pressure was 214 over 170.  I was admitted immediately. Due to the high blood pressure, my kidneys started to fail.  That’s when I was told to go on D while my kidneys still function at 15%.  I’ve been on D for almost 13 years and I still have some functioning in my kidneys but not enough to clean my blood to keep me healthy.   So I really don’t’ have a specific kidney disease, just kidneys failure. Other than that, I’m healthy as long as I stay on top of my treatments.

Please keep in mind that each person’s case is different.  However, we all (D-patients) are striving to stay healthy so we all can live longer.   

[lmunchkin]

Cattlekid, I hope things are going much better for you!  Having to D & work too has got to be so tough.  I don't know how you do it.

I like others, believe this will become easier over time.  It would be nice if you could do it "extended" like Bill P. He has been on D a long time and has a wealth of knowledge in regards to it.

Now I use sharps, I have never used blunts!  When I first started to stick him, I infiltrated, but now, its like nothing. I never stick the same spot in a 3 day session, I ladder it up & down the arm.  He never complains.  The other evening, I stuck him without a turnicate and it went in fine.  I do believe buttonholes are probably the best for someone who is D ing.  It would seem to be much eaiser for your limited movement.

Have you adjusted your schedule any Cattlekid?  I know it is time consuming, but tweak here & there, you could find some more ME time!

God Bless,
lmunchkin
 

[cattlekid]

So I had a night off from dialysis tonight and on my way home from Target, I got to thinking.  When I posted this a couple of weeks ago, I was having problems sticking myself and was getting started late each day. Also, I had skipped a couple of days here and there due to massive alarm problems and was trying to make them up so I hadn't had a day off in a while.  I fixed the problems with sticking not long after that (stopped using the tourniquet) and this week I decided that since sunday was a new month, I gave up trying to catch up and just started this week with my five treatments. Now that I am back on a rhythm, I feel much better.   

[amanda100wilson]

Glad tohear that.

[lmunchkin]

Good Kid, so glad to hear.  Sorry if I overreacted to your first post.  I know it is hard on you, Lord, it has got to be.  I admire the fact that you and others are doing this all on your own.  But I believe it probably is better that you do it yourself if you can!  My J wishes he could, but he can't!

I guess the best thing that I can advise (not being the person receiving D) is take it slow and don't be hard on yourself.  That is what I do, and once I stopped fretting over it, it really has gotten eaiser! And I found that I have more time to do things now.  I don't see where it should be any different for you Cattlekid.  So Im glad you did not GIVE UP!  You hung in there, and you found out what worked best for you!

It's like this, I would love to do "Extended" or "Nocturnal" on J.  But it would not work out for me.  Short daily (3-3.5hrs) works for us.  J. does an excellent job doing what he needs to stay on top of his Intake.  When I get home, we eat & I put him on machine.  We do not get alarms anymore, really!  Every once in awhile, but seldom.  We have infact, learned to love this NxStage machine.

Now if I did not work, I would do the Nocturnal for sure!  J. understands and is so easy to please.  We work together on this, and it has really proven to be a smooth thing with us!  Not at first though, I have to admit.  But now, it is like nothing. Even here lately, Kid, Ive been working alot of hours at my job, more than usual, but we still get things done!

Just settle down with it and don't let it dictate your life!  It will if you let it as you well know!

So glad you got it worked out girl!  And again, sorry for my original reaction, but I felt your "exhaustion" and wanted you to know, that there are other options!  "But glad you stuck with NxStage"

God Bless,
lmunchkin