Introduction

[bmil1652]

I hate dialysis and I am not even the one who has to sit there for four hours.  I am the one who has to put Jeff on the machine and monitor his treatment.  It makes me so tired.  But let me begin back in March 2012.  Jeff and I have been together for 33 years this month.  He is one of the most stubborn, loveable men in the world and he is only 57.  We have lived together these past seven years.
Last March he got sick and was so sure it was the flu.  As he was nearing death he allowed me to call 911.  At the hospital they got him stable and then told me that he was in kidney failure stage 5.  OMG, up until then I had never heard of ESRD stage 5.  I was devastated and there he was on a machine.
Well 12 days later he was out of the hospital and back home and I was running like a chicken with her head cut off.  He was in center and that was a HORRENDOUS experience so I convinced him to train with me to do at home dialysis. 
Took us 5 1/2 week and the NxStage machine and I have become quick friends, although today I could have thrown it out the window.  I get so tired and worn out but then hate to say anything because I know that he is still adjusting to this form of HELL.  His phosphorous has come down from 8.0 to 3.0 and that make me happy. 
I can only imagine how garbbled this must sound to you all but I am so overwhelmed.  I told his hemo nurse that I joined this blog and she just smiled at me.
So my name is Beth and I have more questions than answers.
Thank you for allowing me to take part in your forum.

[MaryD]

Welcome, Beth!       

You sound as though you need to stop and do some deep breathing.  It's marvellous that you two are dialysing at home.  I am doing PD so I can't be much help to you but there are oodles of people on this site in your situation who will have useful ideas which may help you.

[boswife]

ohhhhhhhhhhhhhh Beth, your going to be so happy and relieved that you found this here place    Believe me, theres a bunch of us on both sides of this D thing here and it really helps to let it out, and share what your going through.  Im the wife of the D man, and i too do his dialysis for him.  He does as much as he can, but has lost so much of his strength so that he does other stuff as able.  Yep, its amazing this crap o la for sure, and times where i too want to moan about it even to him, but instead i will come here.  That keeps you from hurting the one you love when all ya needed was some reliese and understanding.  Well, understanding is certainly in abundance here as we have all been put into this fine state of kidney failure.  Hope you get what ya need here.  It has been a huge blessing to me    

[lmunchkin]

Welcome Beth.  So it hit you smack dab in the face, did it?  Same here, my dear!  Had no idea John was in that bad a shape! Never would have ever quessed it.  Although, I knew there was something wrong with him, but he worked a whole lot of hours and we just assumed he was TIRED all the time.
Then Thanksgiving 2004, he was sick as a dog.  He couldnt move.  He was swollen up like a baloon.  Took him to the ER with a BP of 200 something over 200 something.  His BS was through the roof top!
Full blown diabetic with ESRD (5).  Kidneys totally junk!  Looking back, I don't know how he lived through that!

We were devastated as well.  But soon, Beth, it will get better.  The better he will feel the better you will feel too. You are exactly right, they cant help what has happened to them.  Im sure they would trade places with us any day.

Im very impressed with your go gettum attitude!  Become informed with his care is not only good for him, but you as well. Learn all you can about this crappy disease.  This site is a good place to learn.  We did not hear of this site until  6 yrs of dialysis and we trained for the 2nd day of NxStage. I went in and told my nurse that I could not get it and he advised me to come on here and then make my decision.  I did and went in next day saying, "lets do this".  He knew I was ready.  It was still hard at first, much harder than PD, but I learned it and Iam very comfortable with my decision making.

We started out 6 days a week, which was very hard to do cause I work full time.  But we hung in there for over 2 yrs and with his good work on intake and fluids, we are now doing 3 on & 2 off (actually been doing this schedule for over a year now).  I monitor his weight & Bp every evening.  If he needs another day of D, I will give it to him.  No sense in letting it pile up.  We do alot better with this NxStage than PD.  PD was a good modality but in Johns case, he just wasnt getting good clearance.  We literally do not mind doing it more often.  Heck, if it was feisable, I would do Nocturnal.  That is the ultimate to a transplant.  But it will not work with my schedule.

Try to get your husband to help with the set up, or does he already?  You would be amazed at how that helps and he would feel great about it too, knowing he was helping in some way.  Make him help you out, Im sure he wants to but you may not be letting him.  I did my J the same way cause I just worried so much about him. Well that turned out to be very exhausting for me and I would get real short with him.  I did not like that and he did not deserve that either.  So yea, I learned to "lean" on his capabilities more and it paid off.  Things have been alot smoother for us both in the past year and we thank God for it.

Sorry, I realize Im raddling here.  I just want you to know, you are not alone in this.  We understand totally, and if we can help you in any way, please do not hesitate to ask.

Again Welcome & God Bless you Beth, you are an Angel for what you do!
lmunchkin