I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: jbeany on October 12, 2006, 08:53:52 PM
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I found out today that I'm going to be getting a NX stage when I start dialysis. I found this site from the sister site titled ilovenxstage. I think this is the first chat group I've found who shares my attitude. I've been going thru the modules at Kidney School.com, and while the info is helpful, it does all sound like it was written by Pollyanna on crack. Just how happy am I supposed to be about getting hooked to a machine every day, anyhow? What drugs are these hyper positive people on, and where do I get them? ;D
Hmmm. . . the site rules said to introduce myself - so here's the long story short. . . Type 1 at 13, now almost 36. Renal insufficiency for about the last 10 years, on disability for most of that time because of uncontrolled anemia, as well as brittle diabetes, high blood pressure, and diabetic gastroparesis. I've actually felt better in the last few years as my kidney function has worsened, due to finding a doc who put a huge effort into controlling all the side effects and symptoms. (Being dizzy and nauseated all the time does not make for a good work experience!) Had a graft placed after multiple attempts a little over a year ago. Finally to the point where my labs are so bad my nepherologist is determined to get me on dialysis. I was pretty sure I wanted to do home hemo. I'd really like to be able to go back to work, and in-center seemed too much like a job all by itself. The closest center is either an hour south at Petoskey, which would be a real pain to drive in the winter in the snow, or half an hour north, on the other side of the Mackinaw Bridge - closer, but more likely to be completely out of reach on the days I needed it - they shut down the bridge for bad weather quite frequently. Not to mention that we can currently afford only one vehicle, so just getting transportation there was going to be interesting. Plus, my husband is a trained EMT - what better care partner could I ask for? My nepherologist agreed - he thought home hemo would be the best option for me as well. Fewer diet restrictions, my choice of place and time, more hemo than just 3 times a week, Medicare pays right away instead of years later. . .why would I want anything else?
So I fired off an email to the local dialysis social worker, whom I had met with before my graft surgery. I asked for an appointment, and sent her a list of questions that had come to mind from doing research online. Insurance questions, training time questions, machine spec questions. . . .
After a week, I got back a short little e-mail that said "At this time we do not have a home hemodialysis program, and I do not anticipate that we will have one in the future. So, you will need to start in center hemodialysis."
Ummmm -NO!!
Back to the web - the closest center that actually trains for home hemo (no matter what the info on home dialysis central says) is about 4 hours away, in Traverse City. Not ideal - hubby will have to miss a lot of work for training, which we can ill afford - but what other choice do we have at this point? So, I send back a polite little note that says thanks for your reply, but I'm getting a referall from my doc for Munsen. I am not interested in starting in-center at all.
The social worker called me less than an hour after I sent the e-mail. Suddenly, both she and the nurse are jumping thru hoops to figure out how to get the training we need done there. They haven't used the NX stage themselves before, but the nurse is traveling to Traverse City herself to see one being used and get all the info so she can train hubby and I. She's even going to do some of the training on Saturday so he doesn't have to miss as much work.
I am, of course, very relieved that it's all worked out to well, and that they are being so helpful. But does it sound cynical of me to wonder why the sudden change of heart? Are they really being helpful because they are worried about the distance we'd have to drive? Do they only offer home hemo to those who are stubborn enough to demand it? Or did they expect me to meekly fall in-line and in-center?
Hmmm. . . my family didn't give me any genes for "healthy as a horse," but I received plenty of the "stubborn as a mule" variety.
So, that's my story so far. I'm waiting for the nurse to get the info she needs about the NX Stage, and doing as much research on it as I can online.
Thanks for listening!
jbeany
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Welcome to the community. Look forward to your posts!
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Welcome to the site, I love read "intros" like your that give a lot of details. If you have questions about the Nxstage just ask, I have been on the NxStage for a little over 3 months. I recommend you carefully read my daily training blog over at http://www.ilovenxstage.com so you have some idea of what to expect. Again welcome to the site.
- Epoman
Owner/Admin
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:welcomesign; to the site.
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Hey Jbeany, love the intro, nicely done :2thumbsup; I hope you find alot of answers to questions you may have, if not, please ask and any one of us would be more than happy to help you find what you are looking for. We are also (aside from being an awesome website) an awesome support group as well :grouphug; so always remember this, you are not alone and we are here for you :clap; Looking forward to getting to know more about you and your journey ::)
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:welcomesign; to our community, and thanks for sharing so frankly with us. I am really looking forward to hearing from you as you undertake this journey with us. Please keep us informed as time goes on. Take some time to delve into the thousands of posts we have here. You are sure to find very helpful information. Ask questions, that's what this site is here for. Even when the truth is a bit difficult, that is what you will get here. Welcome again! :grouphug;
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Welcome jbeany, good to have you aboard.
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Welcome from one mule to another....... :welcomesign;
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:welcomesign;
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When they realized that Medicare pays immediately (immediately for those over 65 or those with some disabilities) then they kicked into gear. So, I bet it was $$$$ flashing before their little squinty eyes that made them call you and get on the stick. Just my opinion.
You better get them use to the idea of the Button Hole Technique because I think you'll have to learn that too.
Welcome to the site. Great intro! :thumbup;
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... Hmmm. . . my family didn't give me any genes for "healthy as a horse," but I received plenty of the "stubborn as a mule" variety. ...
:welcomesign; Great intro :clap; especially liked the quote above :lol;