I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: esquare726 on July 09, 2013, 07:16:12 PM

Title: Home Hemo Newbie in Raleigh, NC
Post by: esquare726 on July 09, 2013, 07:16:12 PM
After living with CKD for over seven years I've just begun home hemo training with my wonderful husband.

Like so many others, I waited way too long to start treatment and I was so sick.
Fluid overload is what really did me in.  I could barely breathe or walk.
I could not stay awake.

Thankfully, I had requested an A/V fistula be created five years ago so that it would be mature when the time came to
use it.

Dialysis began on June 18th and after just nine sessions on the NXStage System One I'm down thirty plus pounds and feeling rather human.
I've even been driving home or out on errands after each session.

There have already been some scary glitches like a BP crash and painful infiltration, but thanks to our amazing nurse/trainer I got through them
relatively unscathed.  I know full well that there will be other challenges along the way.  I just have to hope that they'll be surmountable.

Hubby's' been a great student.  He's becoming a real pro at this.  Not even getting a bit of a bloody shower yesterday spooked him.
He's double checking all clamps now.

For medical reasons a transplant is not something in my immediate future.  Perhaps, that will come later.

In the meanwhile we've been preparing a dedicated treatment room in our house; one that is on
the second floor that led to our having a stair lift installed so that I can get up there.

Come on down!  I'm offering free rides!!!
Title: Re: Home Hemo Newbie in Raleigh, NC
Post by: boswife on July 09, 2013, 07:50:29 PM
Well well, it's awfully nice to meet you and hear a bit about your and your life :) WE're nxStagers too but hubby Bo is the one ON it ;)  Im the dooer of it though as he's medically unable to do that part of it.  It's worked great for us, though it was a very fearful road for me for a good while.  Scardie cat of it all, but once i calmed down, it's a piece of cake ;)  Glad you found your way here, it's so nice to talke to others with like situations.  so, a big  :welcomesign; to you, and all the best  :flower;
Title: Re: Home Hemo Newbie in Raleigh, NC
Post by: Angiepkd on July 09, 2013, 08:14:33 PM
 :welcomesign; I am a NxStage user, too.  I have never been in center for D, but have found that home hemo is very doable.  Takes some getting used to, but once it is part of your routine, it really becomes just another chore to take care of.  This site has helped me so much!  Everyone here has been supportive and open to sharing their experiences and answering my never-ending questions.  Best of luck to you, and look forward to hearing more from you!  I could use a day at an amusement park, but would probably have to settle for your chair lift lol!
Title: Re: Home Hemo Newbie in Raleigh, NC
Post by: lmunchkin on July 11, 2013, 05:23:00 PM
Welcome Esquare.  From yet another NxStager.  Husband has done other options too, but this seems to be a good one for us both.  I work fulltime & it helps to be able to come home and put him on in evenings.  It works out Great!  If you guys ever want to travel, this machine is very portable. 

It was all so very overwhelming at first, but now seems so simple.  Made us wonder what all the frett was about.

Word of advise, be sure to let your husband KNOW that you love him & what He does for you.  Im sure you do, but sometimes it helps to hear it said too! 

Get him to come on and read & contribute.  This site is good to us caregivers and we know it is so hard for all of you who have to do this.  This stuff really does mess lives up.  Hopefully, one day, they will come up with a Miracle to do away with this Crap, you know. Never give up!  God Love you & your husband, and so glad you found IHD!

Again welcome & God Bless,
lmunchkin :kickstart;
Title: Re: Home Hemo Newbie in Raleigh, NC
Post by: esquare726 on October 05, 2013, 11:04:34 PM
Thanks all for the welcome to the group.

Hubby passed his training with flying colors and we've been dialyzing at home with great success.
There have been a few "bumps," but we have back up care available by two amazing nurses
who've had to come out during the middle of the night more than once to help us.  Our dog and cats
really like that because they get so much attention.

We were about to switch to nocturnal and we've run into a major problem: 

Hubby fell down the last few steps of our staircase and sustained injuries to ribs and lower spine
in the form of six fractures.  Thankfully, there's no spinal cord damage and he can walk, albeit v-e-r-y slowly.

He will need 4-6 weeks for the fractures to heal on their own.  Follow up rehab/pt will be
required.

He can't dialyze me so I have to go in-center, something that I wanted to avoid.

Have any of you hired a private pay D aide?  If so, did they come from home healthcare
agency?  Also, what did you pay?

Thanks so much :thx;
Title: Re: Home Hemo Newbie in Raleigh, NC
Post by: esquare726 on October 05, 2013, 11:06:25 PM
PS - After each session I always thank hubby for loving me so much as to work at keeping me alive.