http://journalstar.com/articles/2004/11/29/stat/doc41abe5c318699800010259.txt
JDL
Hi John,
Thanks for sharing your story with us, and welcome to our forums–I hope you stick around and share your thoughts about how to improve home dialysis machines! There are a number of companies with pipeline products in the works, and ALL of them want to hear from folks who use these machines. So, you have a real chance to provide input that can make the next generation of equipment better than the last one. Once you can visualize something–in as much detail as possible–someone can make it happen.
I had the opportunity to sit down and visit with several people from rather high up at NxStage today. They had found my rant here, and asked for some input about how to make their machine better. They were in town for something else and asked to meet me. I gave them my best ideas, they took notes (several things in particular seemed to peak their interest), and had some good things to say about whats to come. I really feel that they appreciated my opinions, and were very sincere in asking for a patients point of view, (and the food was really good). I was quite pleased with how receptive they were to me, especially after what they read here.
I want to thank the people from nxStage for putting up with me, and listening to what I had to offer. I think both sides got something out of the meeting. I learned a few things, and I hope they picked up some useful insight. I look forward to any possible future meetings with them. I would be glad to use my technical background to help again if they so wish.
I apologize to those here who took offense to my earlier remarks, but I meant what I said, and I’m glad they did not fall on deaf ears. Who knows, maybe my rantings lit a fire under them to make the machine more user friendly, faster, (although in the lab, they have already acted on some of my better ideas) beat me to it, so to speak.
I hope this spring or summer to be in their neck of the woods so I can stop in and visit with them again, as well as meet the engineers.
JDL
Hi Folks
Hi JDL
I don’t think anyone took offense at your post. I think we just wanted to hear your reasons for what you felt.
In my short time in dialysis itself. I found myself with a part of the medical world that seems to be stuck in the dark ages as to the drs, nurses , social workers. My first 5 months I was ashamed, appalled, at the way davita centers are run. Once on the nxstage it help show that the machines are moving in the right way. We just need to get the drs etc to rethink the way they look at the person on dialysis. Not everyone on dialysis needs to be handle like we can’t think for ourselves. It is our kidneys that failed,not our brains. For the first time in 3 yrs my dr commented on how hard those on home dialysis have to work. It only took 3 yrs , and me saying that the idea of stopping has crossed my mind. So it took the idea of him and the center losing money to says something positive. And still you come a center to meet with a group of people, the person still only has a set time to talk to everyone.
I to wait for the next machines that can do more. But I wait more for the thinking to change in the drs etc’s Carry on JDL
thanks
bob obrien
That’s awesome, JDL–I had a feeling that you had some constructive thoughts to help NxStage improve their machine, and am so glad you had a chance to share them directly. You really can help make things better for yourself & others in the future.
Hi. I’m reading these posts about how hard it is to travel with NxStage, and feel sorry for you who have been scared off. I’m the caregiver, my husband has been on dialysis for 7+ years and we hope to get a transplant soon (please God). Until then, here are my thoughts and tips on it:
A) If you start your travel with a crappy negative attitude, the trip is sure to suck whether you’re on dialysis or not.
B) Did you realize that if you travel in the continental 48 they’ll ship your supplies to you? So all you have to carry is the machine (granted, it’s heavy, but I’m a girl and I lift it so suck it up, people, and utilize bellhops when possible) and your peripherals. Oh, and the airlines don’t charge you for any of that.
C) Travel sucked more on peritoneal and regular hemo. At least on NxStage we can set our schedule.
D) Cruises are the easiest form of travel. They deal with dialysis patients the most, know the companies, and coordinate well. They’re always very accomodating, and we’ve been on nearly all of them.
E) Always mark ‘disabled’ on your airline and cruise reservations. Even if you don’t need assistance, it helps with the check in of your stuff with TSA and you usually get bumped to bulkhead, and also get on the ship early.
F) At the end of the day, you can either sit at home and cry about the hand you’ve been dealt or suck it up, put on your big girl/boy britches, and live your life. You can make it happen - after wanting to go to Europe for years, we went in November of 2010. We took our machine and 9 bags of dialysis supplies at ~95lbs each. Oh yeah we did. Guess what? United Airlines (thank you again) didn’t charge us a dime for it. Not. A. Dime. We got there and spent a week and a half cruising the Mediterranean. It rocked. So get out there people!
That’s all I’ll say for now. Don’t be scared, just figure out a way to make what you want to do happen. We leave for Alaska next week!
Amy
Amy,
I agree that traveling with NxStage could not be easier… As long as you make the proper reservations and contact the right people beforehand, then there should be no problems. I read and here from many who have traveled the airlines and stated that they had problems from the begininng… Then I find out that they did not make any pre-planning or any notification of the airles that they would be traveling with medical equipment. They had just showed up at the airport with this giant case and expect not to be stopped or questioned.
When I went to Las Vegas for the NxStageUsers Conference back in 2010, I had absolutely no issues. The TSA staff could not have been more helpful and polite. In fact, the TSA manager on duty walked with us to the gate and as it turned out, he had a relative on dialysis and couldnt believe that you can travel with your own equipment. He also personally carried the machine on the plane while the plane was waiting to be boarded. We then boarded then plane while he was assisting the cycler on board. After he was finished, He even came on the plane while boarding to tell us personally that he delivered the cycler on the plane and it was nice and secure…
I know problems do happen even if planned properly, but we cant let this stop us from traveling.
///MM