Hello from New Mexico

[LoneHighway]

Hello All.

My name is Jeff and I am a 53 year old OTR truck driver living in rural New Mexico. I have driven over 2 million miles in 20 years of driving and I'm currently still working full time (70+ hours). It's getting harder to keep up the pace. I was born with PKD and I have been following it since 1999. My mother died of PKD in 1972 at age 47, and my sister died from PKD in 2006 at age 53.

My GFR is hovering around 20 and during my last visit with the nephrologist we agreed to start the process of getting a fistula and I am to see the surgeon on June 29. I thought I had plenty of time but then last week I had to be hospitalized while on the road for hyperkalemia and acidosis, so I am going to ask the surgeon to schedule it as soon as possible.

I have been doing a lot of reading here and elsewhere and I know that I want to do home hemo with NxStage. I had the opportunity to go with my sister to one of her treatments at a Fresenius facility in Florida shortly before she passed away, and I was shocked at the cold way they treated her and I knew at that time I would never put up with that and want to avoid in-center dialysis any way I can. I was happy to find out that home hemo is better for you and cheaper too. There is only one facility in Albuquerque that is doing a NxStage home program, but there are only 8 people in the program and they have not tried nocturnal home yet. Perhaps I can be the first victim? I have already talked to the clinic and they seem very nice and helpful. My ultimate goal is self-dialysis, because I am a fiercely independent person.

[monrein]

   to IHD. 

[galvo]

G'day LoneHighway and .

[kellyt]

   Hi Jeff and Welcome.  A fistula at 20 GFR.  Wow.  I hovered around 20 for a long time.  I got my fistula around 10.  Do you plan on getting on "the list" or looking for a live donor?  Good luck with everything.  You've come to the right place for info and support.  I look forward to hearing more from you.

[Jean]

     and I so hope that you get everything done the way you want it to.

[MooseMom]

I'm planning to do NxStage when I start D, too.  You'll see from IHD that plenty of people are on NxStage and really are pleased with the results.

I hovered around 20 for years, but once my gfr dropped to 18, it was fistula time.  Haven't used it yet, though.  Still plugging away.

[looneytunes]

Hi Jeff and welcome to IHD!  You sound like you have really educated yourself as to the options and processes and that's a great start.  My husband is a farily new NxStage patient.  We started in April of this year and were the first in our area (right after the nurses were trained).  We live about 2 hours from our supporting clinic.  So far, he has felt better than he has since 2007 (when he first started dialysis).     While I know that NxStage is not going to work out for everyone, it has sure been a blessing to us. 

Again, welcome, and I'm glad you joined our group.   

[Tracy]

Good Luck to you!  I have been on HD in center for one month.  Sure takes some getting use to, but you will be fine. 

Welcome!!

[peleroja]

Welcome to the group, Jeff.  Have you considered peritoneal dialysis?  Once you go through the introductory phase, you can switch to the cycler with only one midday exchange.  Might be able to keep you on the road.  Just a thought.

[AIRon]

Nice to meet you Jeff. If you ever get out to central California and get into any truck trouble call us (The Diesel Doctor INC.) we will get you back on the road.

[LoneHighway]

Thanks for the welcome everyone.

MooseMom:  I hovered around 30 for the last 10 years, then in the last couple of months, my cysts got very big very fast and I am in low 20's, been as low as 19 that I know of.  I'll probably be like you and keep going quite a while after getting the fistula, but that's fine. That ER visit last week was an unwelcome wake up call.

Peleroja: I had always thought I would be doing PD but now that the time is approaching they say I am "not a candidate for PD," but they haven't said why. I'm assuming it's because I am a fairly small person, but I should find out for sure just for the record.

looneytunes: I also live about 2 hours from the center I'll be dealing with, but I'm lucky in that my training partner lives in the city and we can room together for the next year until everything settles down.

AIRon: Every driver has heard of the Diesel Doctor!  Very cool, thanks.

[okarol]

I love New Mexico. I haven't been for a while but it's one of my favorite places to take pictures. Someday I am going to make it to the Balloon Festival in Albuquerque!! (just came across this amazing set of photos http://www.flickr.com/photos/kathleen-andersen/sets/764826/ ) looks like fun!

Welcome! There are lots of nice folks here and we love truckers!

okarol/admin

[Rerun]

Hello lonehighway and welcome to IHD.  One of the Admins on this site is a trucker.  I'm sure he will welcome you and you will have to chat "hey breaker 19 you got a copy?" 

Hope you enjoy the site and I hope your kidneys hang in there for your fistula to mature.

Rerun, Moderator       

[Quickfeet]

 

[Sluff]

Welcome LoneHighway,

I am a truckdriver also. I mostly run midwest and south, southeast now. It is not the easiest of occupation with kidney disease, fortunately mine is somewhat stable. March labs were scary but June showed improvements, so it's keep on trucking for me.  Sorry that your GFR has dropped but you have come to the right place for honest information and true support. I look forward to your posts.

Sluff/Admin

[Bajanne]

Welcome to our community!  You have come to just the right place for information and support.  I admire your independent spirit and hope you can get the NXstage organized and running well.  Let us know how you are doing.  We aren't nosy - just family    Keep reading and keep posting.
Looking forward to hearing from you.





Bajanne, Moderator

[fc2821]

    and hope you can do NxStage.  You are a resiliant fellow and I wish you all the best.  Please accdept my condolences for the loss of your family members. 

[ChickenLittle56]

Welcome aboard LoneHighway to IHD. How far do you travel from your home base. Do you come down to SW. Texas. Are you a owner/operator. If you are are you going to install the NxStage machine in the cab?   I live on the Port to Plains Corridor(US277), so I see a lot of truck traffic coming through our town.

[jessup]

G'day and