Erich, I definitely understand what you are saying. It is understandable though. For your nurse it is a job. For you, it is your life. You are slightly more motivated than she is to spend free time researching your options.
We live in a different world than even 10 years ago. Doctors and nurses don’t have access to any better information than we do. They may understand it a little better, but it is all out there to look at. We should be the ones to bring this information to the doctors and nurses and help keep them up on the latest products and the latest research that is relevant to our situation. I spend a lot of time reading and learning about ESRD, dialysis, RLS, etc. When I find something that may be relevant, I ask questions. Sometimes the doctor agrees, sometimes he doesn’t. That’s ok. I trust him and he always explains why he agrees or disagrees. If I can’t ask the doctor questions when we are paying for his time, it is time to find another doctor.
[quote=billable;12607]Erich, I definitely understand what you are saying. It is understandable though. For your nurse it is a job. For you, it is your life. You are slightly more motivated than she is to spend free time researching your options.
We live in a different world than even 10 years ago. Doctors and nurses don’t have access to any better information than we do. They may understand it a little better, but it is all out there to look at. We should be the ones to bring this information to the doctors and nurses and help keep them up on the latest products and the latest research that is relevant to our situation. I spend a lot of time reading and learning about ESRD, dialysis, RLS, etc. When I find something that may be relevant, I ask questions. Sometimes the doctor agrees, sometimes he doesn’t. That’s ok. I trust him and he always explains why he agrees or disagrees. If I can’t ask the doctor questions when we are paying for his time, it is time to find another doctor.[/quote]
[QUOTE=spiderwoman;1500]I am a home hemo patient on NxStage which is said to be portable but to take it on a plane would be difficult. I would love if NxStage could have machines available at vacation destinations.
I realize that it may not be cost effective but for me to lug the machine to the airport, as well as my supplies (tho I believe NxStage will ship the solution and cartridges). for a week’s treatment I would need saline, needles, Heparin, tape, gauze, etc.
I plan to go to Pompano Beach early May and will probably go to a clinic because it just seems unmanageable to take my machine.
how 'bout it NxStage? any ideas?[/QUOTE]
I am a home Hemo person in Vancouver I am very interested in the NxStage machine…we do not have it here in Canada because Drs feel it does not clear well enough. What are some of your blood tests like?Creatine, Potasium, and Phosphorous? Do you like it. Do you feel well on it? Thanks for you vor your time…Beth
My #'s are creatinine 4 something, phos 3.1, potass 3.8 ( on a 2K therapy fluid ). I do nocturnal txs 7 hrs , 6x. Feeling wonderful. Good energy as soon as I get off the machine at 6 a.m. to start my day. I have never done nocturnal on a standard machine so can not compare the difference. I have heard reports that minute for minute, the standard machines are more efficient than NxS. But I don’t yet know how that spells out in overall well being and future well being. There are articles at Dialysis From the Sharp Edge of the Needle ( think that is the name of the site or something close to that) that present some findings on machine efficiency that I am in the process of reading. NxS just completed a nocturnal trial, but has not released the results yet. I also did SDD on NxS, but more benefits ocurred after going to nocturnal txs.
NxStage is quite capable of delivering an adequate/optimal treatment. There are other factors other than the machine type that control your treatment. A major factor is time. The longer the treatment, the better clearance you will receive no matter what hemo machine you are using. NxStage is quite capable of delivering a normal potassium, phosphorus and other values.
I do 4.5 hours per day, 6 days per week and my post labs (approx 3 hours after treatment) are great… Potassium in the low 4’s, phosphours low 3’s, creatinine 3-4 and BUN in teens.
Suggest that your docs look at the FREEDOM STUDY. You can find it here:
We have the NxStage System One unit for Home Hemo Dialysis. We have done many vacations by transporting the machine and supplies by automobile. So far no problems.
We plan on going on a cruise in Oct.2023. It is aboard the Princess Cruise lines. After booking the trip, we called to coordinate/ get some questions answer and we told by there agents that we are not allowed on the ship with Dialysis! This is after trying to explaine that we do home hemo and do not need support from thier health care providers.
After going through a couple of agents one suggested we talk to Guest Medical services. This did the trick they were ok with us doing treatments on board. We did need a doctors note stating we are capable of performing the treatments and a letter acknowledging we are doing it at our own risk. They even had a form for NxStage to deliver the Dialysate bags to the ship.
Our next obstacle is thransport of the machine. Our center is new to HHD and doesn’t have travel cases (soft sided or hard case). So we have purchased a used road case and a bag to transport the machine.
A travel agent who knows how to manage these issues would be a godsend. While most people on HHD are motivated, not everyone is going to be pushy to get what they deserve. Having someone to help would be great.
Fresenius owns NxStage. It has staff who work for Patient Travel Services and this site says they help people travel in the U.S. and internationally. It would be great if those staff could help people use the NxStage machine on cruises. If you contact anyone in the Patient Travel services about your travel plans, please update this thread with what you learn. Here’s the site: