So Excited!!!

[KatieV]

I had my monthly clinic appointment today and had the following conversation with my doctor:

"NxStage IS quite an improvement over in-center; however, you know how busy we are (there's a running joke that we work 80 hours a week - my husband does have about 70/wk with his multiple jobs).  And over the last couple months I haven't had the energy I had this winter after starting on NxStage.  Therefore, we would like to try doing Extended Dialysis".

"You mean Nocturnal Dialysis with the Nxstage?," he said.

(Gulp, that word isn't supposed to come up!) "Um, yes"

"I think that would be great for you!"  - WHAT!  I had bullet points for reasons why it would be good that I didn't even get to use!  I was expecting to have to lay out a case for it and reason with them to try it.  I am thrilled!  We did talk about my reasons (slower flow rate, longer treatment, no binders maybe, time to DO THINGS) and he agreed with all the reasons.

He talked to the NxStage nurse about it and she's great with it too!  They just want to make sure I'll be set up safe, so they are going to visit a center in NY that has Nocturnal NxStage.  They think we'll be able to start in the middle of September! 

I love my home hemo team!     They have gone above and beyond to make home hemo work for me, including staying until 9:30 pm during training.   

[jbeany]

 

Always nice to hear stories from those who have good care teams!

[boswife]

HOLLY SHUMOLLY!! after listning to ALL the many stories of the battles to get where you got  this is AMAZING!!!  Why oh why can one be so willing and others act like your asking to poison them...  Im so happy for you and hope to hear of how it all goes         

[RichardMEL]

I agree. It's really wonderful to read a positive story about everyone working together to make things better!

[justjen321]

Oh yay!

I'm thrilled for you that it wasn't a battle.

We LOVE Nocturnal. Just started in July, and already we see the huge time difference in our lives. Yay you!

[amanda100wilson]

interesting, the different attitudes.  the doctor who I have just dumped kept me hanging on for months.  I would bring it up at every clinic visit, and there was always a delay tectic, until finally they finally said that they wouldn't support it.  had a chat with another doc. who is now my new neph. and he was all for it.  trying to get used to CPAP at the moment and wait for my NxStage to be delivered to my new unit before I make the switch.

[KatieV]

Well... I've had a setback in my quest for extended treatment...

My NxStage nurse and nephrologist think it would be great for me.  However, since it is not approved by the FDA for Nocturnal, the hospital bureaucracy says they need to have a discussion with the FDA and NxStage.  So, they'll get a Nocturnal program started eventually, but not now.  This is exactly the reason I used the term Extended with my doctor! 

So I asked my nurse if Extended would be okay to do, since that is approved by the FDA.  She said that I could do extended and "they" wouldn't need to know about nocturnal.  She is looking into getting me a heparin pump.  It sounds like she'd want me to do 4 days a week of 7-8 hour treatments instead of the 5 x 3 hours.  I think a 2 day on, 1 day off routine would be good, especially if I'll be using 30L a treatment with the Pureflow. 

I have a clinic appointment on Tuesday and I'll ask for an update.  I'll push for answers if I have to!  Maybe she'll have a heparin pump ready for me.