Scared About Home Dialysis

[boswife]

so cool they're going home with confidence!  I had about none but have since found it     Im so happy for ya all!!

[lmunchkin]

This is great news, MID.  Once they settle to doing it at home, you can do some observing your father and mother in action. It gets even better, if you can believe that!  Your Dad is gonna be able to do it "Blind Folded" after awhile, just kidding!  But seriously it will become so routine it will be like nothing!

Now I have to be honest here, the part I disliked the most was all the testing that they require: Ammi, Endos & Colony counts, blood work and everything! That was far harder for me to learn than setting, cannulating & break down. That being said, I now don't mind all the testing required.

The reason I kept at it and did not give up, was because of my husband. Plain & Simple!  He is WORTH the effort and time. Yes it takes commitment and I know he would do the same for me!

You have real great parents and you are quite SPECIAL kid yourself!  You have stepped up to help and honor your parents!  That is sooooo Awesome!  Again, so happy to hear that things are going so well.  It will get even Better for you and them.    

Thanks for letting us know how it has been going,

lmunchkin     

[MomInDialysis]

   Well I did it today.  I did the full setup, cannulating, and break down.  Had a little problem with my Moms graph on the Venus Stick.  Her graph is not the greatest, so I kind of slid the needle above it.  Fixed it with help from the RN and it all went great from there on out.  No bleeding during breakdown.     
Then I got home and saw all of the supplies that had been delivered and we still have to receive the Center supplied product, saline, syringes, gauze, and on & on & on.  OMG.  I have a 1200 sq-ft house and that includes the overstuffed garage.  I can't find my bed....   20 cases of dialysate (40 bags)  R U kidding me...  The challenge is the storage of all the product.  I hope it all fits. 

BTW  Thanks IMunchkin.  You are right, they are pretty great parents.  They have made numerous sacrifices through out their lives for us kids.  We don't consider this a sacrifice, we consider it a privilege to be financially capable as well as physically able to help them out.  Keep those prayers and good vibes coming.  I think we are going to need them.

More later.

[lmunchkin]

Are you doing pre-mixed (hanging bags) or PureFlow?  There are a lot more boxes required for premixed than the other. PureFlow is an awesome thing when you get real use to it!  Doesnt require too much space, and can go up to 3 days of dialysis with one bag!

We use the hanging bags for traveling.  You are gonna love NxStage for getting away for awhile.  I do wish the cycler was a little lighter and less cumbersome, but it is better than what they use to have, which is NOTHING!  NxStage is a "kickbutt" little machine! 

Guess you can tell I'm excited about this product, huh?

lmunchkin   

P.S. When we first got our start up supplies, they sent 4 cases of gallon size Bleach.  Talk about "Sanitize"! That stuff is wicked!  I ended up putting it in bathtub of quest bathroom!  Nobody uses it, and it gets it out of sight too!

[willowtreewren]

Fabulous! We had to get very creative with storing the supplies. We were on the bags for the first year and a half. The PureFlow is definitely better in terms of storage. That first delivery is a whopper. 

Best wishes for a long and successful run with NxStage. We were very happy with it and could have continued for a long. long time if a transplant hadn't interrupted our treatments! 

 

Aleta

[lmunchkin]

Yeap, and "Interuption" that you would take anytime!  How is it going with him, Leta?  Im so glad that things have been good for you two.  You are good people and deserved such a blessing!  Youv'e been there for him through thick and thin!  Hey, you do what you got to do, right?

NxStage really is a good product!  And Tech Support is OUTSTANDING!  I have never called that they were not accomdating and resolved my issues. Seriously, they are the best at what they do!


Keep us posted, MIM.  Let us hear how it is going!


lmunchkin     

[lawphi]

So glad everything is going well!

[MomInDialysis]

Lmunchkin - We are using the premixed bags for the first week only while they do the setup testing of the water and the pureflow dialysate, but hoping to go straight to pureflow from here on.  We got all of the essentials stored in cabinets and labeled so we know where it is and where it goes(for replacement stock), but the mountain of dialysate bags was a bit overwhelming.  It is all going good so far.  Small quarters 3 large people trying to move around but we shall overcome.

[boswife]

im so happy for how its all going for you.........except of course the space thing..lol  kinda hogs up a bit of room huh..  I sure like hearing you speak of it all so calmly.  It sounds like you all are taking it in stride.  I was a fraidy cat so i must say, it's only been a few months that my heart has settled down and have become a true NxStage lover     I wish you many happy healthy nxStage years and love hearing more... 

[lmunchkin]

As time goes on and you get used to it, you and your Dad will be able to work those supplies down a bit. I really believe that you guys will find this the best dialysis. With me & my husband, it is just the being at home, that made the difference! Like Dorothy of Wizard of OZ, "there is no place like home". That rings true in all our lives!

I can tell by you post, you seem to be adjusting to the idea as Boswife said previously. You have got this thing "Licked" young lady and that is wonderful!!

 And there is another thing that I have noticed about doing nxstage at home, hubby has not been to the hospital since he started a year ago. That says alot! Considering all the hospital visits he has had to make in the past, this is a real Blessing! We have been dialysising him longer and slower so he will get adequate removal and cleaning. If we have plans during his dialysis time, then we adjust to accommodate OUR NEEDS!  This was NxStage reason for coming out with this Awesome machine.  They pride themselves in Home Therapies and they hit the nail on the head with this product.

Is it perfect? Nope, but they go out of the way and you will discover this in your concerns for your mother's care!

Love your enthusiasm!  Overcome you will. What a little Soldier your are for your parents!!!!!

lmunchkin   

[MomInDialysis]

 :; Thanks "I".  You are giving me way too much credit.  I am not really doing anything.  Dad has taken over and become the dialysis champion.  He won't let me do anything.  He has made an incredible turnaround, full 180*.  3 years ago, Mom couldn't show us her access catheter nor her graph when he was around.  Now, we discuss the graph when ever we are in the room together.  We are still in the process of having here checked to start a fistula, so she can be more involved in her own canulating.  I am very excited about how much my dad has become involved, it get me out of the house and they are on their own feeling more independent.
Mom is still having a problem with her potassium running high, so the Dr. is changing her bath.  I am not sure why this is happening, she is being really careful with what she eats in spite of what we have been told about how she wont have to worry as much about what she eats while on home dialysis.  They do 2.5 hrs and it doesn't seem to be enough.  I haven't had a chance to talk to the Dr. but I hope to soon.  We will see what he says.  One thing we have experienced is being put on hold for 15 minutes or longer when we call in for help while the machine is in an alarm that Dad can't figure out.  He is afraid of clotting so he has to take mom off and then can not really figure out what the problem was because she is no longer on the machine.  I don't know if we have a very good support group and they are very busy, or they just have a good canasta game going on.  It does get frustrating though.
How long have you and your husband been doing home dialysis.  It sounds like you have it down pretty good.  Do you dialyze 5 straight or do you break it up.  Mom and Dad have been trying to do  5 straight. 
Anyways, thanks for the kudos, even though Dad deserves them not me.  I appreciate the encouragement and help.
Thanks

[MooseMom]

Well then, kudos to your dad!!

[silverhead]

5 days and only 2.5 hours?, no wonder her potassium is still high, if you can talk him into extending that to 3.5 hours and try a 3 on, 1 off, then 2 on and 1 off and I'll bet you will see an improvement......
Tom