I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Epoman on August 12, 2005, 02:33:53 AM
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http://www.nxstage.com/
Taken from their website:
Our innovations expand and improve treatment options for patients with renal failure and/or fluid overload. It’s about solutions that allow treatment when you want it, where you want it, how you need it. NxStage can change the way that caregivers think about treating their patients, and how patients think about their treatment.
http://www.nxstage.com/products/chronic-care.asp - Simple Home Dialysis, unlike traditional home hemo, Nice!
NxStage Medical Receives FDA Clearance for Home Hemodialysis System
First Truly Portable Hemodialysis System Cleared for Home Use; Gives Patients the Freedom to Receive Treatment at Home or "On the Road"; Increases Access to Daily Hemodialysis That Research Suggests Is Healthier for Patients
Lawrence MA, - (June 29, 2005) - NxStage Medical, Inc. today announced that it has received expanded Section 510(k) clearance from the U.S. Food and Drug Administration (FDA) to market its System One™ portable daily hemodialysis device for home use. This clearance was based on a formal clinical study comparing center-based and home-based daily hemodialysis with NxStage System One representing over 2,200 patient treatments. The study showed that hemodialysis with the NxStage System One is equivalent on a per treatment basis in-center and at home.
The NxStage System One is the smallest, commercially available hemodialysis system. It is portable, allowing patients to travel, and is easy to use by patients with their trained partners. Unlike traditional dialysis equipment, the NxStage system plugs into standard electrical outlets and requires no special infrastructure to operate, allowing its easy use in patients' homes. The personal freedom that NxStage Therapy offers patients makes it an attractive alternative for many of the estimated 300,000 people in the United States who live with chronic kidney failure and are treated with dialysis.
Hemodialysis, the most widely prescribed type of therapy for chronic kidney failure patients, typically consists of traveling to a dialysis clinic three times per week for treatment lasting three to four hours. Recent published surveys suggest that physicians, professionals and patients agree that a greater percentage of patients could benefit from home and/or assisted self-care therapies. There is also a growing body of literature supporting the clinical benefits of more frequent dialysis, often administered in the home. The System One is designed to address these developing markets as well as more traditional acute and chronic dialysis markets.
"Making daily, home-based hemodialysis easier and more flexible presents a tremendous opportunity to improve care for patients," said Michael A. Kraus, M.D., Clinical Director of the Home and Acute Dialysis Units at the Indiana University School of Medicine/Clarian Health Partners, and Principal Investigator of the clinical study comparing NxStage Therapy in the home and in-center settings. "Patients who convert to daily hemodialysis usually show more stable blood pressure, increased appetites and lower anemia rates. NxStage Therapy breaks new ground because its simplicity and portability can make daily hemodialysis more appealing and practical for a larger number of patients."
"I've reclaimed control of my life," states Susan Bower, a clinical trial participant who began using NxStage Therapy 19 months ago following years of three-times-a-week treatment. "I went out of my way to become part of this study. To be able to do what I want, when I want, including travel, means the world to me."
"We are delighted to receive this clearance for home use, which represents many years of hard work by the NxStage team and our clinical partners," said Jeffrey Burbank, President and Chief Executive Officer of NxStage Medical. "The NxStage System One has already been well received in the hospital and dialysis center settings. With our new FDA home clearance, we hope to make home daily hemodialysis more accessible to chronic kidney failure patients, providing patients and their families more freedom and, potentially, significantly improved quality of life."
The NxStage System One is offered by a number of partnering hospitals and dialysis centers across the country. NxStage intends to progressively broaden geographic access to the System One so that it can become more available to physicians and their patients. Treatment with NxStage System One is covered by Medicare just like all other hemodialysis treatments as part of the End Stage Renal Disease (ESRD) program.
About NxStage Medical, Inc.
Headquartered in Lawrence, Massachusetts, NxStage Medical, Inc. is a medical device company that develops, manufactures and markets innovative systems for the treatment of end-stage renal disease, acute kidney failure and fluid overload.
- Epoman
Here are the specs:
Therapy Options
Hemofiltration, hemodialysis, and/or ultrafiltration
Flow Rates
Blood: Up to 600 mL/min
Fluid Exchange:
Up to 12 L/hr
Fluid Removal:
Up to 2.4 L/hr
Size
Dimensions:
(in) 15 x 15 x 18
Weight: About 75 pounds
Cartridge Configuration
With or without a pre-attached filter
Single use, gamma sterilized
Picture attached is from the NxStage website.
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Well after watching this for some time now and hearing so many good things about it. I decided my goal for this year is to get on this machine. I would love doing this at home. I also like the fact that I would be able to take my wife on a vacation for the first time in 13 years of marriage (I don't call visiting her mother and step dad in Oklahoma a vacation). But anyways the bad thing is for some reason over here on the West coast it is just barely being used in fact the nearest Davita that supports it is a few hundred miles away. However Kaiser in Los Angeles has just started a NxStage program. I would have to leave Davita (oh no please not that ::))
But I got to get the Kaiser doctor to refer me. But her and I have not been on the best of terms, EVER. My Davita doctor has no problem with it and would like me to be his Guinea pig. It amazes me however how unknowledgable the staff of Davita were about this spectacular machine, I literally have to educate them about this machine, Even the social worker had no idea in fact she had no idea Davita even offered Home Dialysis besides PD, and she works there and is supposed to be my advocate. ::) I did call the Davita that is offering it that is a few hundred miles away and the charge nurse was very helpful, she even called Nxstage to find a center closer to me.
So I will keep you all updated on my attempt to be the first one at my center to be on the Nxstage system. I have learned that in life if you want to get something done it's better to do it yourself, that is if you want to ever see it done.
- Epoman
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Well I got word today that my Kaiser doctor is on board with the idea and is sending a referal to the Kaiser hosiptal that offers training. I got the call from one of the case workers today and I was really surprised. So now it's just a matter of time it looks like. I may make my goal earlier than I thought. This will change my world and I can't express the feelings I have right now. Lately I have been getting really down going to the clinic and rightfully so I have been doing it for almost 13 years straight. It's time for a change. I'll keep you all updated. If I have to leave Davita and go to a Kaiser unit so be it.
- Epoman
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This sounds great Epoman... good for you.. hope everything works out! :)
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Another update, I got a email last night from the So. Cal. NxStage rep and he left me his cell number. Well I replied and I told him my situation (Long email, sorry Alvin) ;) And I left him my Cell and home numbers and what do you know, he called me this morning and introduced himself and told me what the So. Cal. situation was and how UCLA Davita will be starting their NxStage program soon (couple of months) and he would forward my information to the right person over at UCLA Davita.
Thank you Alvin for taking the time to speak with me and for trying to get in touch with me in the first place. It is people like you that are going to Revolutionize this terrible disease, and make life better for us patients. It really impressed me that you took the time to call and took an active roll in my situation.
Alvin gave me permission to give his contact numbers out so if anyone else out there in Southern California wants more info about the NxStage email me at admin@ihatedialysis.com and I will forward his information to you.
Everything is moving so fast. I now have to decide should I wait for "UCLA Davita" or go with "Kaiser" I could probally get on Kaisers NxStage program sooner but I would loose my Neph that I have been with for almost 13 years. As long as I meet my goal which is being at home before my birthday which is August I will be happy.
- Epoman
Here is the email I received:
Hi, I work for NxStage in So CA. I am trying to get in touch with
Epoman about the NxStage system one cycler he is interested in. If you
know how to reach him, please give him my e-mail; ******@nxstage.com and
my cell; ***-***-****. He can contact me by either method he chooses.
Thanks,
Alvin Armer
nxSTAGE Medical, Inc.
***-***-****
www.nxstage.com
Here is the Reply I sent him:
Hello I received your email, my name is Bill Halcomb and I am extremely interested in the NxStage. I have been watching your company for a while now and I think your machine is the revolution that many of us long term patients thought we would never live to see. I have been on for almost 13 years now straight no transplant. And my body has definitely taken a beating. Even though I am the owner/admin of ihatedialysis.com I created the site not to endorse a negative attitude but to rather give fellow patients an "outlet" to rant and vent there frustrations with the everyday frustrations living with kidney failure. For example as you can read from one of my recent posts I had asked my Davita social worker about Home-Hemo and she had no idea Davita even offered a home program other than PD. And when I told her about NxStage she was totally clueless, and she is supposed to be our advocate. So I started on my quest calling NxStage and Davitaathome and Kaiser getting all the information I could to get the ball rolling. I have the approval of both my doctors (Kaiser, and Davita) and I already have been sticking myself for several years.
To be honest I am just looking for a better way of life. I want to be able to go on a cruise and or trip with my wife and vacation on my schedule and also I have a 8 year old son and I am very active in my son's schooling. I am very active in the PTA and I am also the yearbook chairman. I am constantly having to request different dialysis times at my center just so I can make some of my son's events at school. Sometimes Davita can not accommodate me so I miss out at my son's school. I am also the assistant coach of my son's basketball team with the Y.M.C.A. even though I am in a wheelchair.
I am tired of the in-center environment and I feel this will give me new hope and encouragement to know that If I dialysis at home not only will I have more freedom, I will feel better and will live longer. My only goal in life is to see my son go off to college and become a better man than I.
So far I have not had any luck with a possible Davita in my area close enough to train me. I am willing to travel to get trained. I would like to stick with Davita if possible however I will change to a different center if need be. I am sure I would learn the machine quickly as I am very adapt to technological items. Plus I already know how to canulate myself.
Thank you for taking interest in my situation, and if you have any more questions or if you can help me, feel free to contact me further via email or my cell phone at ***-***-**** or at home ***-***-****
I hope to add my success story to your website one day and let the world know what great things your company is doing for us. Even in a world where in-center hemodialysis is big business and highly profitable.
Bill Halcomb
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WHOOPEEEE!! Good job!! Way to go, Epoman! You'll be "Home" soon.
BTW, my couple of contacts w/ NxStage when I was searching for a clinic for my husband were also very positive. Wish I had the $$$ to invest in their stock -- I could have bought soon after the IPO at less than $10 and currently it's pushing $15.
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Wow Epoman that is great!! I hope you get trained and home dialysis soon. It will be interesting to watch your progress.
:D :)
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Well another update it looks like I may be getting closer to my goal in fact I spoke with one center today (Thanks to Alvin the NxStage rep) and if I decide to go through them I would be added to their list and I could start my training in May maybe late April.
It's not a Davita center nor is it a Kaiser center, it's a "indie" (independent). I spoke to the man in charge over there and he was very knowledgable and he seemed to truly care about my situation.
It's all a matter of me making a decision, I have to decide fast though because NxStage is going to be BIG in So.Cal. the waiting lists are going to grow fast. I don't want to be stuck on a waiting list forever.
This is truly an exciting time for people with ESRD.
- Epoman
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I am getting more and more intrigued the more I read about the NxStage machine. I think we have to definitely wait until we move (hopefully this year into our own home) as right now we don't have an extra room, and with 4 dogs and a few cats, it wouldn't be a proper environment for the machine/procedures right out in the open w/ all of them running around. Epo, best of luck getting that set up for yourself as quickly as possible!
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I am getting more and more intrigued the more I read about the NxStage machine. I think we have to definitely wait until we move (hopefully this year into our own home) as right now we don't have an extra room, and with 4 dogs and a few cats, it wouldn't be a proper environment for the machine/procedures right out in the open w/ all of them running around. Epo, best of luck getting that set up for yourself as quickly as possible!
The NxStage is going to revolutionize the industry. I don't have an extra room I'm going to just put it in my bedroom, and I live in an apartment.
- Epoman
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How close do you have to live to a center to get the NxStage? The closest one that I can find is in New Port Richey, which I think is about 3-4 hours away. :-\
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How close do you have to live to a center to get the NxStage? The closest one that I can find is in New Port Richey, which I think is about 3-4 hours away. :-\
Hi Sara,
Are you north or south of NPR?
Lorelle
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North...we're in Jacksonville. Are you in FL?
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North...we're in Jacksonville. Are you in FL?
Born and raised in FL. Was just there a couple of weeks ago -- have family in central FL and a cousin in Jacksonville.
Have you contacted NxStage to see where they already have machines in FL? Is that how you found NPR center?
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How close do you have to live to a center to get the NxStage? The closest one that I can find is in New Port Richey, which I think is about 3-4 hours away. :-\
I have spoken to a NxStage rep (So. Cal) and he said people are traveling to get to a center to train. Some are traveling from other states, several hours away from their home. I say are you willing to travel 3-4 hours once a month to the center? just until a center closer to you offers it then you can transfer. Once you're trained you're all set. You do not have to deal with the bullshit of in center and you will have your FREEDOM. Trust me I've been doing this along time. If you can get NxStage by driving 3-4 hours once a month DO IT!!! You husband will feel better and have much less complications down the road If this machine was available 12-13 years ago and I knew then what I know now believe me I would travel to the other end the world to get trained. Trust me this will be so good for your husband emotionally and physically.
- Epoman
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Do you know what the training is like? Is it one day a week for several weeks, or every day? Do you have to go to that one center for once a month bloodwork and check up, or can you go to any center for that?
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Do you know what the training is like? Is it one day a week for several weeks, or every day? Do you have to go to that one center for once a month bloodwork and check up, or can you go to any center for that?
Training can be anywhere from 2 to 6 weeks depending on the individual. You would go Monday through Friday 5 days a weeks for training and dialyize at the same time. Most centers allow you to draw your own blood at home and mail them, or take them yourself, or someone will pick them up. It's up to the center. You can't go to any center you would need to go to the center you were trained at, that will be your "Home" center. The actual training would consist of learning how to set up the machine and learning how to stick your own needles. And would also learn about the different alarms and how to resolve problems that may arise, such as getting saline if you start to cramp, or your pressure drops.
I have spoken to many people about this machine and I have not found one person speak bad about this machine. It almost sounds too good to be true. The only thing you need to remember is you will be dialyzing more often than conventional dialysis. You will be running shorter however most people run 2.5 to 3 hours versus in center 3 to 4 hours. I myself will be starting off with 5 days a week 2.5 hours and I'll see how that goes.
At my home I will have a nice recliner with heat and massage, my TV with DVD player and digital cable with all the cable movie channels, A nice window to look out of, a tray that will hold my Laptop computer with wireless internet connection, Stereo/Radio, All my books available to me, a home phone instead of having to use a cell phone in center getting bad reception, the room temperature just right, and best of all no one dying in the chair right next to me. Oh and lets not forget not having to listen to techs talk their native language right in front of you laughing and having a great time all awhile you have no idea what the hell they are saying.
- Epoman
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Do you know what the training is like? Is it one day a week for several weeks, or every day? Do you have to go to that one center for once a month bloodwork and check up, or can you go to any center for that?
My husband, Mike, and I have made arrangements to train at a Davita clinic in Atlanta, two hours away. The director said we would train together for a week or two and then I would come home while he continued to train for several weeks. (In a later conversation, since speaking w/ me at length for a couple of times, she said she felt sure I could probably stay less than 10 days and my husband probably just two or three weeks.)
She said there are rooms at a local hospital, like a Ronald McDonald house, where we could stay if we were financially unable to afford a motel for that length of time. (We'll probably stay w/ family who live in Atlanta.) After Mike comes home we will communicate w/ the center by computer and phone, and only have to go there once a month. If a center nearer to us gets NxStage we can transfer there.
If I were you I'd start w/ a phone call to NxStage, asking for the closest clinic already using their machines. Ask for a call back from a sales rep and ask them if they know of a clinic in your area that would possibly be favorable to starting a NxStage program. Can't remember where I heard it but I think NxStage wants at least 10 patients to start a program in a clinic. You may have to actually visit several clinics in your area and meet w/ the social worker or director to get the ball rolling. The incentive will be that once the program gets started the clinic will make money off of the NxStage patients because their overhead for those patients is lower than in-center dialysis! (Isn't it ridiculous that we have to be the advocates for better and more efficient care for their patients!?! >:( )
There are probably a couple of dozen dialysis clinics within 100 miles of Jacksonville. Last year Davita bought most of the Gambro clinics. According to switchboard.com there are about 20 Gambro dialysis clinics within 100 miles of Jacksonville, so you may be able to find one of them already working to get a NxStage program going.
Also, here are two lists of dialysis clinics -- don't know how current the contact info is.
http://www.healthcarehiring.com/dialysis_facilities_florida.html
http://www.healthcarehiring.com/dialysis_facilities_georgia.html
I suggest checking the the Davita and Gambro clinics first and then the independents -- IMO, Fresenius is the least likely to be cooperative as they want patients to continue to use their machines.
I know this is an aggravating situation for you -- it took me several weeks to find the clinic in Atlanta, but I truly believe it was worth the time and effort to get this for my husband.
Good luck and please let me know how it goes for ya'll.
Lorelle
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... At my home I will have a nice recliner with heat and massage, my TV with DVD player and digital cable with all the cable movie channels, A nice window to look out of, a tray that will hold my Laptop computer with wireless internet connection, Stereo/Radio, All my books available to me, a home phone instead of having to use a cell phone in center getting bad reception, the room temperature just right, and best of all no one dying in the chair right next to me. Oh and lets not forget not having to listen to techs talk their native language right in front of you laughing and having a great time all awhile you have no idea what the hell they are saying.
- Epoman
Bravo!! I am soooo happy for you!! You guys doing this for a long time have been through so much. The day to day aggravations you mention above were horrible :o but really not the worst. IMO, the worst is the ignorance and arrogance of the medical professionals who should have taken better care of you >:(. I can't imagine the relief you anticipate by being in control in your own home and being able to really take care of yourself at the high standard all dialysis patients deserve. Dialysis is still going to be a b*tch at times but I really believe in 5 years you will be so much better and that wheel chair just a memory! People like my husband, Mike, are benefitting so much from the experiences of people like you. I can't thank all of you enough and I'm so happy to share in your joy!
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Good luck to all who are trying to get on NxStage. Plus Epoman you will have all that time on your hands to do what you want with your son. It sounds much better than going 3 x a week to the dialysis center. :)
Kevno
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Unless I missed it amongst the lengthy postings....there's been no mention of
water treatment. :-\
I have 2 big ('sknidiver-size') carbon tanks & 2 (1 micron & 5 micron) filters
in a set-up outside the window, same as the ones in-center.
So, what happens when you go to a hotel/on a cruise/in a campervan, as
far as water treatment. I'm pretty sure the uinit's too small to have it built in.
But if you had a holiday home, or a relative you visited regularly, they could
get that side of it fixed up somewhere out of their way.... ;)
....very interested tho. What do they cost btw? ;)
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Well new update I found a center thanks to the NxStage rep who can fit me in about the first week of MAY. That's just about 2 months from now. Everything is moving so fast and I am both excited and scared. remember I have been doing in-center Hemo for almost 13 years now and it's going to be a couple of more days a week extra of dialysis. But I will have FREEDOM and not be tied to a center.
Before I used to dream of seeing my son graduate high school and I would be content in knowing that I raised him and turned him into a man before my kidney failure finally got the best of me. But then a company like NxStage comes along and gives me hope and the very possibility of seeing my own son become a father himself. NxStage did not invent a new dialysis machine, they found a way to keep a father alive longer for his son.
- Epoman
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Unless I missed it amongst the lengthy postings....there's been no mention of
water treatment. :-\ ...
Because w/ NxStage here is none.
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Unless I missed it amongst the lengthy postings....there's been no mention of
water treatment. :-\
I have 2 big ('sknidiver-size') carbon tanks & 2 (1 micron & 5 micron) filters
in a set-up outside the window, same as the ones in-center.
So, what happens when you go to a hotel/on a cruise/in a campervan, as
far as water treatment. I'm pretty sure the uinit's too small to have it built in.
But if you had a holiday home, or a relative you visited regularly, they could
get that side of it fixed up somewhere out of their way.... ;)
....very interested tho. What do they cost btw? ;)
Here read this: (See picture)
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O.K.....I read it. ;D
You are dealing with a skeptical old cynic here, Ep'
So I'd need a bit o' convincing.....still, we've got you
now as our guinea pig. :o ;)
...off ya go my son - round that maize...oh, no that's rats
isn't it, sorry ! :D
Seriously tho...glad you could get on the program so quickly!
Best of luck.....you _may_ have to change the site name, perhaps??? ::) ::)
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O.K.....I read it. ;D
You are dealing with a skeptical old cynic here, Ep'
So I'd need a bit o' convincing.....still, we've got you
now as our guinea pig. :o ;)
...off ya go my son - round that maize...oh, no that's rats
isn't it, sorry ! :D
Seriously tho...glad you could get on the program so quickly!
Best of luck.....you _may_ have to change the site name, perhaps??? ::) ::)
No the site will always be called "ihatedialysis.com" and in my situation I will STILL hate dialysis, I'll just hate it from the comfort of my home. ;D
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Hi, my name is Alvin Armer. I am the NxStage representative in Southern California that has been talking to Bill, "Epoman". I am happy that he found a unit and am confident that things will work out for him. If you have questions ??? regarding our product and live in So CA, please feel free to e-mail me at aarmer@nxstage.com. If you live out of the area, :o you can e-mail me and I will forward your message to the correct person or you can call our customer service group ;D at 866-nxstage. Also, visit our website at www.nxstage.com.
Thanks and I look forward to helping as much as I can.
Alvin
PS. Keep an eye ;) on Epoman, he is going on an exciting adventure! :D
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Before I used to dream of seeing my son graduate high school and I would be content in knowing that I raised him and turned him into a man before my kidney failure finally got the best of me. But then a company like NxStage comes along and gives me hope and the very possibility of seeing my own son become a father himself. NxStage did not invent a new dialysis machine, they found a way to keep a father alive longer for his son.
This makes me want to cry. (in a good way) :)
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O.K> so now I've negotiated the site map & read the patients own story....
It's much more like being on P.D. (for those that P.D.actually works for) on
mobility factors - getting the fluid delivered wherever you're going.
I assume the dialyzers still come separate ?
Anyway, I shall be very interested to see if/when this thing makes it "down-under"
...I did notice they were adamant that patients shouldn't dialyze alone....I do tho! :D
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Alvin, I live in Sacramento.... That is South of Redding in Southern California. Is that South enough? Don't you think you should start at the state's Capitol First? ;D
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Well time for another update. I have 3 centers that I will possibly goto, one is not covered by Kaiser because they do not have a contract with them, but the center would take me with Medicare only (80%) however my Medicare is attached to my Kaiser and Kasier already told me if I go with that center they would drop me, the bastards. The second center is another Davita in fact it is U.C.L.A. Davita and Kaiser WILL cover them since I am already going to a Davita. The third center is a Kaiser center but they are my last resort. I do not want to be connected with a Kaiser center it's bad enough I have their insurance. I plan to drop them in December during open enrollment at my wifes job if I can't get into U.L.C.A. Davita. But thankfully everything is going as planned and U.C.L.A. has already requested my medical records from my current Davita center. U.C.L.A. Davita may have me as early as Mid-May.
This has really made me even more aware of the fact the as a patient we really need to fight for ourselves to get things done. So stay tuned to see how this all turns out.
- Epoman
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Do you worry about the long range effects of a lactate based dialysate on your liver function? Can you really increase the liver's work load and not see any negative effects?
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Do you worry about the long range effects of a lactate based dialysate on your liver function? Can you really increase the liver's work load and not see any negative effects?
There were 4 patients who were in the initial study who just crossed the 2 year mark last December and are doing great. Lactate is also used in PD solution. If this is a concern of yours, talk to your MD or one of the NxStage RNs can talk to your clinicians to dispel any concerns. If it were an issue, the FDA would not have approved it. So no I do not worry.
- Epoman
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The nurse at my center just asked me about nxstage. This was the first I heard of it but I'm glad I did. I told them I would like very much to try nxstage, I already put in my own needles so that will not be a problem for me.
The thing I don't under stand is any place I have heard any one talk about home dialysis is why is it 6 days a week not 7.
I'm sure if you like you could probably do it 7 days I just didn't know if there was a reason for only 6 days.
I also some times wonder what effect getting stuck every day will have on my fistula. :-\
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At my home I will have a nice recliner with heat and massage, my TV with DVD player and digital cable with all the cable movie channels, A nice window to look out of, a tray that will hold my Laptop computer with wireless internet connection, Stereo/Radio, All my books available to me, a home phone instead of having to use a cell phone in center getting bad reception, the room temperature just right- Epoman
Can I come and live with you, please? Pretty please?
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Well time for yet another update. Well here it is April and I am still fighting with Kaiser to let me go to the center I want to which now informs me they will do 90% of the training in my own home. :o I would just need to go one week to the center then after that they would come to my home to finish training me. Kaiser refuses to let me go. They are insisting that I go to their center for NxStage training even though they know it's an inconvenience for me and my wife. Plus today I got word that they may not even give me a referral to UCLA Davita to get the training since they want me to go to the Kaiser clinic. Even though I already go to a "Davita" center they may not let me transfer. ::) They are really trying to keep me in their system, not even thinking nor caring about my wants and needs. Also the guy from the center I want to go to tells me he may have to bump me to June instead of May if we can't get this straightened out by the end of next week. I had the chance to change insurance at the end of last year but I didn't think I would be trying to get on NxStage so soon. After this big mess if I don't get in at the center I want, you can bet your ass I will be dropping Kaiser at the end of this year faster than a fat kid eats a cupcake.
We'll see what happens when I go to an appointment with Kaiser next Thursday so they can tell me how long before they can train me. If it's too long hopefully I can use that too my advantage and try to get them to let me go to the center I want (non-Kaiser) that can accommodate me in May. I guess the appointment is to evaluate me for NxStage and to meet me. But it sucks because I have to go all the way down there so they can tell me they have a waiting list. They won't tell me over the phone how long the waiting list is, I will keep you updated.
- Epoman
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Epoman
I can't believe they are giving you such a hard time about what center you go to. I mean the cost is probably the same no matter what one you go to.
I hate how the insurance companies seem to be able to run every thing. It drives me crazy >:( I mean who do they think they are. This our lives they are playing with.
I hope things work out for you before too much time goes by.
I live in MA so I hope the gov. doesn't start messing around with our health care. It's working good right now but he is trying to pass some stupid new law on it.
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I'm hoping to get a nxstage soon :) I can hardly wait I can only imagine that it will feel like being freed.
My only concern is about my fistula. I don't know how sticking it twice a day will affect it.
I tried the button hole but it didn't work out to well for me but I'm giving it another try. I don't think it worked out that well because my fistula was pretty beat up by the time I tried it.
If any one has done or is doing daily dialysis has any input I would love to hear about it. ;) ;)
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Well time for another update. I went to my Kaiser appointment and actually I was very impressed with the way they treated me. The doctor I saw was wonderful. She even gave me her direct number. :o I was shocked. They are going to start my training in about a month maybe a little longer. They are doing everything to accommodate me. I actually would still prefer to go to that other center (non-Kaiser) but I think Kaiser may work out after all. I am going to ask them if I can video tape my training to post here so you all can see how NxStage works. I hope they let me. If not I can make a training video myself when I get home after I am trained. I was very impressed with everyone at that Kaiser center, it was very different than what I am used too at my current Kaiser center.
I will keep updating you all as new progress happens.
- Epoman
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NxStage first quarter conference call today.
http://biz.yahoo.com/cc/4/66554.html
I found it interesting. They are predicting patient numbers to go from over 400 currently, to over 1,000 by year end. (I expect it to be more!) If I recall correctly, they currently have 94 clinics using NxStage System One machines.
They gave results on three recent studies. I was most impressed by their emphasis on the better health of home patients compared to in clinic, and also that when patients were given training and the choice between NxStage and 2 competitors -- 70% chose NxStage!! The cost savings for home dialysis patients was mentioned and should be a selling point for the clinics, for Medicare, and for insurance companies.
The dialysate machine is about as complicated to hook up to a household water system as an ice maker and is made to look like a piece of furnature and can be used as a "stand" for the dialysis machine, System One. Sounds great!! Especially since it will replace for most patients, most of the time, the bags which are currently coming from Mexico.
The patient backlog was discussed and their take is that the clinics are not that interested unless they have enough patients wanting NxStage to keep a training team working steady for at least a few months -- if the back log goes to more than a few months, NxStage will step in and help out. :)
They read some feedback letters from patients using the NxStage machines and they were great!!!
At one point there was a question about cost per patient and the answer was about $15,000. Is wonder, is that the companies cost or the centers cost?
When I get time I want to listen to it again. In the meantime, did anyone else hear it and have questions or comments, so I'll know what to listen for?
Lorelle
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Hi Lorelle,
here I am as a NxStage user living proof online :P ...hopefully once I get a nice video camera I will make my home made dialysis movie...
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Well last week, the social worker and one of the nurses from Kaiser Sunset came to my house to inspect my home, dialysis area and outlet. The visit went very well, I showed them how really ready I am, I have my area all set up, I got the outlet grounded, and I have a place for supplies. Plus I applied for a ride service to take me to Kaiser everyday for a $1.80 each way. It's a half-hour trip, so that's a steal. They say I am next in line, to start my training. We literally talked for over an hour, the inspection took like 2 minutes top, I spent the rest of the time talking about how ready I am for this. So now I'm than closer than ever.
- Epoman
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Well last week, the social worker and one of the nurses from Kaiser Sunset came to my house to inspect my home, dialysis area and outlet. The visit went very well, I showed them how really ready I am, I have my area all set up, I got the outlet grounded, and I have a place for supplies. Plus I applied for a ride service to take me to Kaiser everyday for a $1.80 each way. It's a half-hour trip, so that's a steal. They say I am next in line, to start my training. We literally talked for over an hour, the inspection took like 2 minutes top, I spent the rest of the time talking about how ready I am for this. So now I'm than closer than ever.
- Epoman
I am impressed! Is this really house or is it an apartment? Either way am glad your gonna train soon...your gonna love it dude! I wonder though why they went and inspect your house? ??? They didn't inspect mine at all, perhaps change of rules maybe......However, they did come and stayed on the first day at home. They wanna be sure all is okay on first day at home.....
Btw, your not on a wheel chair are you?
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Well last week, the social worker and one of the nurses from Kaiser Sunset came to my house to inspect my home, dialysis area and outlet. The visit went very well, I showed them how really ready I am, I have my area all set up, I got the outlet grounded, and I have a place for supplies. Plus I applied for a ride service to take me to Kaiser everyday for a $1.80 each way. It's a half-hour trip, so that's a steal. They say I am next in line, to start my training. We literally talked for over an hour, the inspection took like 2 minutes top, I spent the rest of the time talking about how ready I am for this. So now I'm than closer than ever.
- Epoman
I am impressed! Is this really house or is it an apartment? Either way am glad your gonna train soon...your gonna love it dude! I wonder though why they went and inspect your house? ??? They didn't inspect mine at all, perhaps change of rules maybe......However, they did come and stayed on the first day at home. They wanna be sure all is okay on first day at home.....
Btw, your not on a wheel chair are you?
Different clinics/insurance has different rules I guess. I live in an apartment but a good size apartment, with a garage. And yes, I am in a wheelchair. Read my bio/intro.
- Epoman
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Well last week, the social worker and one of the nurses from Kaiser Sunset came to my house to inspect my home, dialysis area and outlet. The visit went very well, I showed them how really ready I am, I have my area all set up, I got the outlet grounded, and I have a place for supplies. Plus I applied for a ride service to take me to Kaiser everyday for a $1.80 each way. It's a half-hour trip, so that's a steal. They say I am next in line, to start my training. We literally talked for over an hour, the inspection took like 2 minutes top, I spent the rest of the time talking about how ready I am for this. So now I'm than closer than ever.
- Epoman
I am impressed! Is this really house or is it an apartment? Either way am glad your gonna train soon...your gonna love it dude! I wonder though why they went and inspect your house? ??? They didn't inspect mine at all, perhaps change of rules maybe......However, they did come and stayed on the first day at home. They wanna be sure all is okay on first day at home.....
Btw, your not on a wheel chair are you?
Different clinics/insurance has different rules I guess. I live in an apartment but a good size apartment, with a garage. And yes, I am in a wheelchair. Read my bio/intro.
- Epoman
Hmmm, you must have some strong hands and arms? Later on show us a pic from your first day at home using NxStage and get us a pic from your training session to! :)
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Time for another update:
Well I finally got the call I was waiting for. I was told I will start my NxStage training on July 10th. It's a little longer wait than I hoped but at least I will start training. I will keep you all updated.
- Epoman
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Time for another update:
Well I finally got the call I was waiting for. I was told I will start my NxStage training on July 10th. It's a little longer wait than I hoped but at least I will start training. I will keep you all updated.
- Epoman
Hooray!!! 8) Hope everything goes very well. ;D
Hubby goes on Wed for results of last two blood draws. I'll be surprised if Neph does not encourage him to go ahead and get on NxStage waiting list. My last conversation w/ the social worker indicated that the one week wait had increased substantially.
Lorelle
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Nxstage still hasn't replied to my email about distribution in France or anywhere in Europe as a matter of fact >:(
I talked about Nxstage to my nephrologist and he had no idea what it was.
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Time for another update:
Well I finally got the call I was waiting for. I was told I will start my NxStage training on July 10th. It's a little longer wait than I hoped but at least I will start training. I will keep you all updated.
- Epoman
Hooray!!! 8) Hope everything goes very well. ;D
Hubby goes on Wed for results of last two blood draws. I'll be surprised if Neph does not encourage him to go ahead and get on NxStage waiting list. My last conversation w/ the social worker indicated that the one week wait had increased substantially.
Lorelle
Thank you, yeah I hear in some part of the country the waiting list is growing fast, I've hear up to 6-8 months.
By the way Black have you seen this thread? http://ihatedialysis.com/forum/index.php?topic=584.0
- Epoman
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Great Epoman. My friend in Spokane who is a home hemo patient is dialyzing in center until a part comes for her machine. They told her they may not be able to get it. I want her to look into NXStage.
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My friend in Spokane who is a home hemo patient is dialyzing in center until a part comes for her machine. They told her they may not be able to get it.
What kind of machine are they on? Is it an older machine or a machine that is no longer produced? They may just need to upgrade to a new machine.
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Well here it is, I am going to start. I start July 10th. This coming Monday :o I am scared shitless. I am so worried about my fistula or doing it daily. I hope everything goes well. I have heard nothing but great things about this damn machine and when I had first heard about it, I wished that one day I would be able to be on it. ::) Well you know what they say, be carefull what you wish for. :o because you just might get it. :o Well I am getting it. ;)
Today was my last day at DUH-vita, my biggest fear is that one day I will have to go back there, the people are great but I hate the company as a whole. Everybody at the davita I go to is great, they do some things that piss me off but then I remember they are there to earn a paycheck, sometimes they don't think, but oh well. For the most part they are a good group of people. Some of the best I have ever seen in my 13 years of this battle.
It actually was kind of sad leaving, I will miss most of them, I have known those people for 6 years. I knew one of them for 13 years. I feel sad, scared, relieved, and worried all at the same time. I will miss some more than others, and I feel like I am losing a few friends. I will continue to post here and keep everyone updated on my new adventure that makes me so scared I want to piss, oh wait that's right, I can't. ;D
- Epoman
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You go, Epoman!! We are with you all the way. We know you are going to do well. And we look forward to a blow by blow description!
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Epoman, I felt the same way when i left to start my PD, I too made alot of friends (and probably some enemies too knowing my smartass mouth) nah, lol, But i was also afraid of the cycler, its going to take a little time to adjust but once you do adjust its all about smooooooth sailing and you are going to be so much happier. Please do keep us posted cuz you know we are all here for you and do care....Be strong amigo
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By the way Black have you seen this thread? http://ihatedialysis.com/forum/index.php?topic=584.0
- Epoman
Just saw this post -- haven't been here as much since school got out -- reading as I get time and only posting occasionally. Everyone is going on vacation and I'm "babysitting" their dogs. I've had 32 (besides my 4) come and go since June 28 alone! Still have 3 HUGE labs, 2 of which weigh over 100 pounds, plus 3 others under 15 pounds. Thank God for the money, but I sure am tired!! Anyway, I have been to my profile and entered further data -- didn't realize I could do that until you directed me to the other thread, thanks.
Lorelle
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Well here it is, I am going to start. I start July 10th. This coming Monday :o I am scared shitless. I am so worried about my fistula or doing it daily. I hope everything goes well. I have heard nothing but great things about this damn machine and when I had first heard about it, I wished that one day I would be able to be on it. ::) Well you know what they say, be carefull what you wish for. :o because you just might get it. :o Well I am getting it. ;)
Today was my last day at DUH-vita, my biggest fear is that one day I will have to go back there, the people are great but I hate the company as a whole. Everybody at the davita I go to is great, they do some things that piss me off but then I remember they are there to earn a paycheck, sometimes they don't think, but oh well. For the most part they are a good group of people. Some of the best I have ever seen in my 13 years of this battle.
It actually was kind of sad leaving, I will miss most of them, I have known those people for 6 years. I knew one of them for 13 years. I feel sad, scared, relieved, and worried all at the same time. I will miss some more than others, and I feel like I am losing a few friends. I will continue to post here and keep everyone updated on my new adventure that makes me so scared I want to piss, oh wait that's right, I can't. ;D
- Epoman
Tomorrow is the BIG DAY!! Please let us know how it goes.
Lorelle
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Hey Epoman, today is the big day... Hope your doing well and the training is going good. Let us know A.S.A.P. whats the happening k.... :)
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Well here it is, I am going to start. I start July 10th. This coming Monday :o I am scared shitless. I am so worried about my fistula or doing it daily. I hope everything goes well. I have heard nothing but great things about this damn machine and when I had first heard about it, I wished that one day I would be able to be on it. ::) Well you know what they say, be carefull what you wish for. :o because you just might get it. :o Well I am getting it. ;)
Today was my last day at DUH-vita, my biggest fear is that one day I will have to go back there, the people are great but I hate the company as a whole. Everybody at the davita I go to is great, they do some things that piss me off but then I remember they are there to earn a paycheck, sometimes they don't think, but oh well. For the most part they are a good group of people. Some of the best I have ever seen in my 13 years of this battle.
It actually was kind of sad leaving, I will miss most of them, I have known those people for 6 years. I knew one of them for 13 years. I feel sad, scared, relieved, and worried all at the same time. I will miss some more than others, and I feel like I am losing a few friends. I will continue to post here and keep everyone updated on my new adventure that makes me so scared I want to piss, oh wait that's right, I can't. ;D
- Epoman
Good luck Epo. You will do fine and I'm sure you will love being at home. If you need anything, let us know. I don't know what that would be.... maybe just prayers. ;)
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Has anyone heard how Epoman is doing? I am getting worried, EPOMAAAAAAAN, WHERE ARE YOOOOOOOOOOOU??? ARe you at Tito's Taco's again??? Hope all is going well for you my friend....And i hope to hear from you soon....(the bones are getting cold) So whenever your ready, BRING IT.....
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Day Number 1
Ok well I'm back and I got to tell you it was quite the experience. It is VERY intimidating to know you have to hang those 4 big bags every time, plus the saline bag. Plus there are a lot of steps involved. But I really don't care to much about myself, I am thinking of the burden it will be for my wife, that is the scary part. She is all for me doing this however I care more about her then I do myself. Here's how the day went:
8:35am - arrived at the center, first thing I am told my son can NOT be here. I told her no one told me that, and any of my pre-visits. They will allow it today and I must figure something out for the rest of the training days. Already off to a bad start.
8:50am - I go and get weighed and my wheelchair does not fit on their scale, so I must stand. Not a problem, I can stand just not walk or stand for very long. We go back to the room and I sign 4 or 5 papers authorizing this that and the other. The HUGE NxStage manual is given to me and my wife. I ask a few questions like do I need to come Saturday since I have prior obligations, I am told no, the training is only Monday through Friday. That is good. I did not want to come 6 days a week to Kaiser. So now the nurse there was two of them started to explain how to set up the machine. I will not go into details now as I will be making a new post with pictures and steps. Ok so I see that there are these 4 huge bags of dialysate fluid on the desk across from me and I think those all can't be for one treatment, well they were. Each bag weighs in at 11 pounds. Now the first thought out of my head was "oh man Trina will have to lift 4 of those EVERYDAY. So the nurse goes into detail on how to set up the machine and honestly I am feeling already overwhelmed at the amount of steps involved. However I right away see some time savers that I can implement once I am home and on my own. Then we get to the fun part.
9:45am - Now the nurse tells me she is going to stick me, I tell her "I told you I already stick myself" she said "We need to do it, to learn your fistula" I argue a little but trying to be the nice guy I am I give in after she tells me "you can stick it today but the rest of the week, we will stick it" So I tell her go ahead and let the other nurse stick me. Well she does and right away I can tell she is not in deep enough, so I reach for the needle and the other nurse tells me "hands off", Well screw that I have been sticking myself for many years now, so I grabbed the needle and proceeded to stick myself and I got it right after I fixed her mistake. Unfortunately the damage had already been down the infiltration happened and cause a little hematoma. I was now pissed because I have been sticking myself for several years and I have NEVER caused any problems with my fistula. But because I didn't stand my ground, I get screwed.
10:00am - So now I am on the machine and they are deciding on how much fluid to remove from me, I tell her I usually remove 4 kilos on a Monday but since we are doing it again tomorrow, how about we do 2 kilos she tells me "NO we can't do that, the doctor has you ordered for no more than a kilo a session. I'm like WTF? a kilo. After "discussing" it further I talked her into 1.5 kilos. And honestly she made it sound like she was doing me a favor. But anyway, So now they show my wife what all the buttons do and mean and how to set up the machine. Then she proceeds to run me at 480 blood flow, man I tell you the lines were JUMPING I usually run at 400 maybe 430 once in a while. I explain that to her and she proceeds to tell me "be quiet" She was talking to my wife but I'll be dammed if I am going to run 480 when I never have gone that fast before. So I told "NO I am not running 480, it's to much pressure on my fistula" so she reluctantly lowers it to 450, I figure I better pick my battles and I just stay quite since I have run 450 before and I know my fistula can handle it. My blood pressure was high since I got there, I was nervous and felt like vomiting all morning due to my nerves and having a very stern nurse did not really help my emotions. So now I ask what my arterial and venous pressures are? My arterial pressure is 190 which is very similar to my in-center numbers. But then she tells me my venous pressure is 230 WHAT! It usually is 120-140 at 400 flow in-center and she insists again that the machines are different, and are measured differently. Now I am really worried. I will call NxStage later.
11:00am - So now we are still being shown the machine and all of its features and I bring up a "battle", I told them I do not want my Epogen given "sub-q" meaning in the arm and I already knew that Kaiser is big on giving it in the arm. In the old days when Epogen first came out it was believed it was better absorbed in the muscle of the arm, well over time it was found out it does not make a difference. In fact I had already called the NxStage rep (GREAT, CARING guy BTW) and asked him if he knew patients who got their Epogen in the lines of the machine and he said yes. In fact he said "the lines have a med port". So I felt better about that. My philosophy is I already get stuck with needles 6 times a week, I do not need a few more sticks. It's NOT necessary. I had also asked the NxStage rep, what happens when a patient needs a chest cath? He assured me that a chest access can be used at home to, AND that some patients even use NxStage with a GRAFT. I was always told a fistula was absolutely needed. But I guess it is just the "preferred" choice. But anyway the nurses started saying "oh no, it needs to be sub-q, and we don't have protocol for doing it in the lines, and anyway the NxStage has no med-port. Well I refused the Epogen today while the work on a solution. They said they will check with NxStage and see what they can do.
11:30am - So now half way into my treatment my new doctor comes in and I can't say enough good things about her, she even gave me her direct office number, which is really rare because all the doctors I have encountered never gave me their direct number. So I ask her some questions and she answers gracefully. I ask her "Why can't I stick myself"? she said you can and I tell her what the nurse tells me and the doctor makes it clear only I will be sticking myself. Then I ask her about the Epogen and she to is perplexed and examines the machine for a med-port. So she assures me she will look into it and she what they can do. Then I ask the "BIG" question which to my surprise, was well met, I told her how I have heard that some people do the NxStage just 5 days a week. And she was very open to the idea and said it all depends how you feel and what works for you, not in those exact words but still I got the message, I was worried they would "stone" me to death for bringing up the subject matter. Then I brought up the 1 kilo removal limit per session and she says "no I wrote it for 1 Kilo every hour" and the nurse showed her where the doctor wrote the 1 kilo limit. Well suffice to say the doctor was right, she had written it for 1 kilo EVERY hour. The nurse was wrong. I talked some more with the doctor and while the doctor was in the two nurses were very quiet. When the doctor left I felt a little better about the whole situation. However my blood pressure was still elevated.
12:00am - I got about a half hour to go on the machine and so far so good, I am tolerating the dialysate solution well, and to the nurses surprise my machine has not alarmed once. I am surprised to. In fact I wanted it to alarm so we can start learning what to do when it does beep, but it's just the first day. My wife took our son to Subway down the street to get him a sandwich and during that time, the nurse and I talked, I talked about this website and told her all about it and I told her about my son. I love to brag about my son, I can talk about him for days.
12:30 - Time to go! I ran about 2:35 minutes, I ran 450 blood flow, I removed 1.5 kilos, no alarms, and I felt pretty good afterwards. My arm was a little sore from when the nurse infiltrated me. So For the first time my wife and I pulled my needles together. We worked as a team. My wife and I am a good combination, I am the wild, crazy one, my mouth always getting me in trouble, and my wife is the calm, collective, never worries about a thing person, but put us together and we enhance each other. So they show us how to disconnect everything and earlier one of the nurses went to grab a bunch of supplies, she said we will take a little each day so we do not have to much to take all at once, makes sense. So she had even us a couple of bags full of supplies and a sharps container. Then I went to weigh and we said goodbye.
Oh I forgot to mention, I also told them that my wife would only be here this week and that for the next weeks she will come, but can only stay for a couple of hours. She will have to go to work.
Overall I feel like I am starting all over again. I am worried sick about my fistula lasting, I will be using the buttonhole and many people have good things to say about it, so hopefully I will be able to get one going to. I am also overwhelmed by the whole process, it is scary. I hope I have made the right decision. Because you know the old saying:
"Be careful of what you wish for you just might get it"
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Great Epoman!
I'm so glad the doctor has some brains. Good grief you would think they would be ecstatic that you "could" stick yourself.
You need to ask about the 450+ blood pump speed. If that is too much, then have them turn it down. Remember this is your life. They fu*** up your fistula they go home to their life and leave you to die.
You should have asked you Dr. why your son could not participate. He could help too. I have about five 9 year old technicians at my center! ;D
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Glad to hear it went well (after some minor battles) but i am sure they are trying to do what is in your best interest. Your dr. sounds great, very caring, i am happy for you. How much longer do you have to train? How long will you be running on the machine when you get it home? I cant wait to see the pics (AND YOU BETTER BE IN THEM) ;D
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WOW, Epoman! You had quite a day! I am glad to see that although you were nervous, you still stuck to your guns. I dont understand why the nurse was so against your sticking yourself when it is something you will have to be doing all the time.
I felt great that the doctor showed up and showed them up!!!
Well, we are all with you in this. Keep us posted. We are looking forward to seeing those pics.
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What an adventure you had. I can't understand why the medical professionals willnot listen to the patients. Often we have been at this longer than they have been. Stick to your guns Epoman and go, go , go!
Katherine
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Good to hear you're finally testing out this thing you have been praising for a while.
Hope everything goes smoothly for you and your wife and while we're at it your son too!
It's funny that as patients we have these sets of things we know must be done a certain way but whenever we are faced with different nurses etc we tend to let our guard down and let them take in charge. Too many times I have learned the hard way not to fully trust someone who doesn't usually take care of you.
Show them what you got and if they can't find the med port for the Epogen just stick the nurse six times and tell her would you like me to stick you once more to give you an idea what it's like to get my Epogen shot? >:D
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Day Number 2
Well I'm back from day number 2, I felt really sick this morning (in my stomach) and I think it was due to the Phoslo, I started phoslo (again) and I took 5, 667mg caps last night and I don't think I needed it, I didn't eat much. So I felt sick to my stomach. I really can't say if it was the phoslo or the dialysis not being as strong as the in-center machine. But anyway we got there at about 7:15am, we were told we could come earlier, so we did. Right away I insisted that I be able to remove 2.5Kilos at a bare minimum, I wanted to remove 3.0kilos. But I was met with resistance yet again and told I could only run what ever my doctor ordered. So I told her to please call the doctor and she said she is not in, so I told her to call someone in charge. So she went and came back and said the chief of nephrology said just wait till your doctor comes in. I told her then she better go get him, because I need to talk to him. He came in a few minutes later and we discussed it. He told me to just start with a goal of 2.0kilos for now and when the doctor comes in she can increase it. So I agreed. We also discussed Pump speed and he talked me into leaving it at 450. I do have a big fistula and I handle the speed fine. But I am still worried about my fistula. But back to the "goal" I explained to the "chief" that every Monday when I came in, I would always remove 4.0kilos as a minimum at in-center, and we only had removed 1.5kilos on Monday. I explained to him that I felt fluid overload, in fact my BP was high yet again today and it has been great for months. So later when my doctor came, she agreed with me that I need a higher limit of fluid removal per hour. which is now 1.5kilos per hour, which means I can only remove a maximum or 3.0kilos per treatment, since with NxStage they calculate in whole hours so the last half hour doesn't count. Basically that means they will remove all the fluid in the first 2 hours then after that, the machine is just cleaning my blood. I know it's strange. But oh well, that's just the way it is. Now when I get home I can increase the fluid removal, however it is not recommended and it would mean I would be running longer. Today I felt a little less afraid. My wife seems to be getting more used to it and looks less intimidated. The nurses commented that my wife and I are "getting" it.
Now about the "Buttonhole", well I stuck myself in the same spot as I did yesterday, and these needles are sharp, the needles slid right in. I was kind of grossed out having to sit there and be watched while I pick the scabs off my fistula. I saw a "Blunt" needle today and they are a little sharp, there ARE dull but I could cut someone with it if I tried. When the needle slid right in, I felt no pain, it was surreal. I can only imagine when I have the actual buttonhole in place. I don't like the fact of having to pick the scabs off, but oh well, you do what you got to do.
Now about the Epogen, they still had not heard from NxStage about the Epogen situation, but it seems they understood my point and I received my Epogen in my lines at the end of dialysis, we just used the venous line and flushed it with saline afterwards. I don't care how they give it to me as long as they do not stick me with a needle. I got my usual 5,000 units of Epogen and I will get it 3 times a week. Later in the evening I got home and the NxStage rep called me back and told me he spoke to one of the clinical advisers and indeed you can inject the Epogen on the little med port at the venous side of the dialyzer. So that is good news. Hopefully this will answer someones questions in the future who also does not want to have the Epogen Sub-Q.
Now about the Heparin well, I learned today that they give you the heparin all at once in the beginning of treatment, as the NxStage has no heparin pump. So I received 5,000 units of heparin at the beginning of my treatment.
By the end of treatment I had run 2:41 at 450 blood flow and removed 2.9 kilos of fluid. Again I felt pretty good after dialysis, but it's strange it kind of hits me a few hours after I get home, I feel a little sick. I hope everyone is right when they say I will start seeing an improvement in my health, well only time will tell.
They also drew my labs today, and I forgot to mention, that yesterday they informed me that I would not be drawing my labs at home and would have to be going to a local Kaiser to have it drawn and that means they will have to draw it in my other arm, where my veins are really hard to find. So that kind of bums me out knowing that some home patients can draw their own labs and either take them in or have a courier pick it up. But Kaiser informs me that they are working on a solution to the visit to the blood lab once a month. We will see.
The "chief" kept asking the nurse what my calcium was, and I kept telling him it was 6.7 as of last week, I told him several times but he just ignored me like I had NO idea what the hell I was talking about. I kept trying to tell him "I KNOW MY LABS" but he said let's just wait until we get the results back from the lab later today.
Also during my treatment the nurse came in and asked if she could bring a couple in that was interested in NxStage, I said SURE, they came and I told him all about the machine and it's benefits. And of course like EVERYONE else I have talked to at Kaiser, I told him about this website and he says he will check us out. He laughed at first when I mentioned the name, like most people do. However I explained to him what a great bunch of people we have here, and that this place is not about being negative, it's about being part of a community. A site FOR patients BY patients.
Stay tuned.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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since you are currently using Nxstage I know if you have any pics of the set up or process that us at D&T City (http://groups.msn.com/DialysisTransplantCity) would be interested in them if you wanted to post there about it as well ;)
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since you are currently using Nxstage I know if you have any pics of the set up or process that us at D&T City (http://groups.msn.com/DialysisTransplantCity) would be interested in them if you wanted to post there about it as well ;)
I will be posting pics of my setup and I will be posting a VIDEO of the machine being setup. I can't do that however until I get home with it on my own. The nurses at Kaiser do not want to be video taped. :(
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since you are currently using Nxstage I know if you have any pics of the set up or process that us at D&T City (http://groups.msn.com/DialysisTransplantCity) would be interested in them if you wanted to post there about it as well ;)
I will be posting pics of my setup and I will be posting a VIDEO of the machine being setup. I can't do that however until I get home with it on my own. The nurses at Kaiser do not want to be video taped. :(
Ah yes .. I have noticed nurses don't like to be taped... I guess incase they screw up and it is caught on tape ???
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Day Number 3
Today I woke up and I actually felt pretty good, I got right up at 5:45am this morning, so I could drop my son of at my wife's aunt and be there by 7:00am. Today my wife and I went together but she will have to leave before me, she has a "thing" with her job that she needs to take care of. So when we get there I go and weigh I only gained 0.9 WOW! it's going to be great not having to remove 4.5 to 5+ kilos every treatment. so the nurse stood back and watched my wife and I get everything ready, my wife is amazing she is picking up the steps very easy. We worked as a team today, I helped as much as I could. We only made two mistakes. The first being we left one of the lines in the machine, we closed the front with the saline line stuck inside, but we figured it out and took it out. It didn't cause any problems. Second mistake we made was we got all hooked up and forgot to push the heparin, oops. So we quickly turned everything off and my wife and I pushed the heparin, we caught it fast enough before the dialyzer clotted. Other then those two mistakes we did VERY good according to the nurses. So my goal was .9 + .5, I wanted to try to get my weight lower. About 8:30am my wife left and the nurse and I went over the manual and I took notes. Oh before I forget, when I was first put on, my venous was really high, about 310 to 330+ so I decided to flip the needle and put a gauze under the line and that worked wonders, my venous pressure went to about 220+ @ 450 blood flow, which is good. I used to get 120 to 130+ @ 400 flow at in-center however I have been told by the nurses and NxStage that the venous on the NxStage machine is measured differently. I am sure that's true because I felt no pain when the venous was 330+.
But anyway since my wife had to leave early, I had to catch a ride, so I could not get a later pickup, so I cut my time 15 minutes so the driver would not leave me stranded. Cutting your time once in a while is not a problem at all when you do daily dialysis. I got off the machine feeling great, I only removed 1.4kilos, actually I only needed to remove 0.9kilos but I wanted to test my dry weight. Removing that little of fluids, feeling like crap afterwards or bottoming out is the thing of the past with this machine.
I am tired however, because I get up at about 5:45am to get there early. I will be REALLY glad when I am home, and not have to get up that early. Also I know it's kinda early to post my lab results, so I won't but lets just say my labs are looking better. I will go into more details later in my thread, when I get my next lab results.
Stay tuned.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Why the hell didn't the nurse tell you that you forgot the heparin. Is she going to test your knowledge when it comes to air in the lines too? GEEZ. She probably didn't catch it either.
You are doing great!! ;)
Sorry, but I could not stick myself or pick scabs. Can the helper stick you (and pick scabs)??
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Why the hell didn't the nurse tell you that you forgot the heparin. Is she going to test your knowledge when it comes to air in the lines too? GEEZ. She probably didn't catch it either.
You are doing great!! ;)
Sorry, but I could not stick myself or pick scabs. Can the helper stick you (and pick scabs)??
She forgot to. :o But she caught it right away.
But yeah, I hope everything stays this way, because there is NO! pain at ALL with the buttonhole. I hope I have no problems. But yeah a "helper" can stick you and take off the scabs. I think it's kind of gross picking the scabs, but I tell you what, when I go to dialysis now I don't even think about the needles. I hope everything stays the same.
I actually look forward to dialysis tomarrow. :o :o :o :o :o
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GOOD FOR YOU EPOMAN, YOU GO BIG GUY....YOU WORK IT, DONT LET IT WORK YOU.... i look forward to reading on your experience tomorrow...
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EPOMAN, I am enjoying the daily renditions of your trials and tribulations as you learn yet another stage of your journey down this ESRD road... Very interesting, but I am sure it is difficult to remember all the steps ~ soon you will become proficient as' practice makes perfect !' I have faith in you, whatever you set your mind to, you can accomplish, look what you have done for the renal world !!! You are very lucky to have such a helpful and willing spice!(er, spouse) Bet your son will know the ropes soon after you get home with that machine, too! Might even help with the 11 pound bags! Keep up the good work!
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Epoman,
If I can give my hubby meds at midnight for two weeks and then change the time and dosage, you can do the Nxs machine! I think you have balls to stand up to those nurses and do what is right for you. I don't know if you read Jimcales.com blog, but he just started the NXs machine also.way outin Tennessee.
Katherine
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Epoman,
Hi! It's Joe Atkins aka Dialysis Joe from Dialysis & Transplant City. I'd like to invite you to write an article about yourself and how NxStage has affected your life. Would you be willing? We would be very appreciative and I think that the community at D&T City would learn a lot from your experience.
If you're willing, please contact me at dialysisjoe@hotmail.com
Thanks.
Joe Atkins
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I actually look forward to dialysis tomarrow. :o :o :o :o :o
::) :o ???
;D
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dialysisjoe, is that about the new home hemo machine that does NOT require in home plumming?
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Why the hell didn't the nurse tell you that you forgot the heparin. Is she going to test your knowledge when it comes to air in the lines too? GEEZ. She probably didn't catch it either.
You are doing great!! ;)
Sorry, but I could not stick myself or pick scabs. Can the helper stick you (and pick scabs)??
She forgot to. :o But she caught it right away.
But yeah, I hope everything stays this way, because there is NO! pain at ALL with the buttonhole. I hope I have no problems. But yeah a "helper" can stick you and take off the scabs. I think it's kind of gross picking the scabs, but I tell you what, when I go to dialysis now I don't even think about the needles. I hope everything stays the same.
I actually look forward to dialysis tomarrow. :o :o :o :o :o
That is what I want to learn is the buttonhole technique. I know Dialysis Joe was saying before (I think it was him) that it would be an excellent idea for me. A guy in my dialysis unit was doing it and I watched him pick off his scabs and get ready for the needle insertion.
I am hoping I could build up the nerve. I am afraid of the needles but I think I could pull off the scabs easily enough like he was. I mean .. a lot of things I have been scared of I just had to work up the nerve and practice .. work up to it slowly.
Have any advice for me? They haven't taught me yet since I will have to change shifts.
Epoman,
Hi! It's Joe Atkins aka Dialysis Joe from Dialysis & Transplant City. I'd like to invite you to write an article about yourself and how NxStage has affected your life. Would you be willing? We would be very appreciative and I think that the community at D&T City would learn a lot from your experience.
If you're willing, please contact me at dialysisjoe@hotmail.com
Thanks.
Joe Atkins
Hi Dialysis Joe! About time you came! I had mentioned to Epoman that he should post something on D&T ;)
dialysisjoe, is that about the new home hemo machine that does NOT require in home plumbing?
You should ask Epoman! ;) Since he is on it after all :P
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Epoman,
Hi! It's Joe Atkins aka Dialysis Joe from Dialysis & Transplant City. I'd like to invite you to write an article about yourself and how NxStage has affected your life. Would you be willing? We would be very appreciative and I think that the community at D&T City would learn a lot from your experience.
If you're willing, please contact me at dialysisjoe@hotmail.com
Thanks.
Joe Atkins
I will be sending you a email. Thanks for your interest and for joining. There is a BIG surprise coming REAL soon. Stay tuned.
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There is a BIG surprise coming REAL soon. Stay tuned.
Doing it to us again, huh? This surprise thing. Think about what the suspense is doing to my blood pressure!
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There is a BIG surprise coming REAL soon. Stay tuned.
Doing it to us again, huh? This surprise thing. Think about what the suspense is doing to my blood pressure!
ooooh I NEED that then :P My BP today was 86/53 and when I unlocked my bike (I went to the store today) and stood back up all I saw was black and I had to sit back down. When I got home I called Dialysis to say that there was no way I was gonna take my BP meds to bring down my BP with a BP like this!
So go ahead ;) Raise my BP ;)
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HEY EPOMAN,,, YOUR LEAVING US HANGING OVER HERE, WE WANT TO KNOW HOW YOUR DOING!!!! NO POSTS FOR DAY 4 AND DAY 5. WHAT'S THE HAPPENING??
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Angie. Did you know anxiety, stress, fear, rage, and vigorous exercise are all great means to get your blood pressure soring. I know the exercise thing can be a little to much for anyone subjected to regular dialysis treatments but the others shouldn't be to hard to muster. The trick is to find a good way to get your adrenaline pumping.
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Day Number 4
Well, I did not have time to write this yesterday, so I am writing this today and I will still write day number 5 after I finish writing this day. So today is number 4, and I feel great. Today I only had to remove .6 can you believe that? I actually only had to remove .1 but I wanted to get my dry weight lower. Plus a couple of more people have told me how better I am looking. They saying I have more color back and I look more rested, even though I am tired, due to the fact of having to get up at 6:00am every morning. Today went smooth, only one nurse was training us today, the other had to be somewhere else. My wife and I did everything correctly, I look to see the things I can do to help her while she is putting me on. For instance I added the warmer bag, held lines, pushed my heparin, put my needles in, and primed a few lines. I really think we will be ready by next week. But I am sure they will make us stay a 3rd week, after all it's only for our safety. They sent the "EVIL" dietitian in to see me, luckily she didn't treat me like a "new" patient and was actually very nice. I mentioned our site to her and she said "That's YOUR site?" she said "I have heard of it" that made me feel really good to know she has heard of this site. She asked me the usual about my diet and my meds and was shocked that I was not on a vitamin. I had told her that when I did take a vitamin I did not notice a difference in my lab results. But she really wanted me to start taking a vitamin again so I agreed to try taking a vitamin again. So I'll see if it makes a difference, she explained that since I will be dialyzing twice as much, I will lose more of the "good" stuff through the NxStage. I can't believe I have had 4 sessions in a row and I do not feel bad, AND I have been sticking myself in the same spot (buttonhole) 4 times and my fistula has NO pain when I stick the needles. It's amazing, now when I do dialysis I do not even think of the needles, all of the anxiety of the needle sticks is gone.
I feel more secure in doing this, I still do have some worries, however I can't believe how feel it goes not having to go to Davita and watch the drug reps kiss the nurses, and techs asses and bring them food almost on a bi-weekly basis. I have never understood why the reps kiss the techs asses, it just doesn't make since to me. We the patients are the ones taking their damn medicine.
I brought home some more supplies today and almost have my metal cabinet full. Pics will come soon.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Day Number 5
Whew! first week down, 5 days straight of dialysis. And today I had to remove. 1.7kilos, I wanted to go .5 below my dry weight due to the weekend. I will not have dialysis for Sat & Sun, so I am kinda worried how I will feel, since I have been feeling so well. The trainers do not work on saturdays or sundays. So on one hand, it will be nice to have 2 days off, since I have done hemo 5 days in a row. But on the other hand I am almost addicted to dialysis. I actually never in a million years think that I would say that, but maybe once the "new experience" runs out I will feel deferently. So when my wife and I got there, we started to do our thing and the main nurse left the room for a moment and the other nurse did a step for my wife, while my wife was attaching the drain tube, she was just trying to be helpful, but she messed it all up and when the other nurse came in we tried to correct it but it was still getting errors. So finally the head nurse decided to restart, we had to "trick" the machine into starting over the "priming" process. It was all agree that the other nurse through my wife off of course and had she not tried to help out we would have done it right. But it's ok I am not upset, I made a few jokes and we were back on track.
Today I was really tired, in fact I fell asleep on the machine toward the end. I was kinda worried because the head nurse had to leave early and we would be left with the nurse who I think is in training herself. I was worried because my wife was a little worried herself, since she is not as confident in the "take off" procedure as she is with the "put on" proceedure. But I survived, I did notice that my pulse was 100+ after and it had not been that high all week. I brought home MORE supplies today, I even brought home a case of saline and a couple of "kits" a kit consists of the dialyzer and the tubing and it all comes on a cartridge. I asked for them so I could see how many would fit in my metal cabinet. which is starting to fill up.
Here is a list of supplies I will need to keep in stock at my home to do, dialysis up to 6 times a week.
The numbers below are for a months supply.
- 48 boxes of Dialysate solution (2 bags per box, 4 bags per treatment)
- 2 boxes of saline a month (1 per treatment, minimum)
- 4 boxes of "cartridges/kit" which includes dialyzer and lines, etc. (1 kit per treatment)
- 4 bottles of heparin (1 bottle per week)
- Plus 48 needles, guaze, gloves, tape, syringes, swab sticks, put on blankets, and a few other little items.
- Of course the NxStage machine and of course the 'Epogen'
Honestly all of this can fit in a small closet. Unlike conventional home-hemo.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Saline - 2 boxes per month? How many bags are in a box? You just use one bag of saline per run?
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DAY NUMBER 5
...on one hand, it will be nice to have 2 days off, since I have done hemo 5 days in a row. But on the other hand I am almost addicted to dialysis. :o ...
- Epoman
12+ years in-center Hemo
Current NxStage USER
Wonderful news!! ;D :o ;D :o ;D So far it seems it was worth the wait. My husband will be so pleased that someone like you, who has just about experienced it all, has deemed it a success. Hope everything just keeps getting better.
Lorelle
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Saline - 2 boxes per month? How many bags are in a box? You just use one bag of saline per run?
14 bags per box, yes 1 bag per treatment. That includes priming and rinseback.
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I am glad things are going well for you Epoman. Now quit making excuses and get your butt in that boneyard, (if you dare) lol, i got a bone to pick with you
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Angie. Did you know anxiety, stress, fear, rage, and vigorous exercise are all great means to get your blood pressure soring. I know the exercise thing can be a little to much for anyone subjected to regular dialysis treatments but the others shouldn't be to hard to muster. The trick is to find a good way to get your adrenaline pumping.
That would be great except that my pulse is 114- 140 all the time ... I want to raise my bp a little without giving myself a higher pulse ... before the fistula I never had a high pulse and before hemo (when I was on PD) my bp was never too low (except once but that was because of too high of dialysate).
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I am glad things are going well for you Epoman. Now quit making excuses and get your butt in that boneyard, (if you dare) lol, i got a bone to pick with you
I really want to play domines again with you, I had a great time, I'm am just doing so much right now. I have that "surprise" I am working on and I need to do some work on this site, plus get my place ready for home-dialysis. :)
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Awwww Big Guy, you know i just like to give you a hard time. I know you are busy with all that is going on with your Home Dialysis and i am soooo happy that everything is working out for you... I am not going anywhere, sorry guys, but i am here for good, lol, so WHENEVER you are ready, just say the word amigo.....
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Day Number 6
Well I did not have training during the weekend so I had two days off, and I felt pretty good except for feeling a little sick around Sunday night. But it wasn't bad like the usual feelings I have on a Sunday night. I probably felt that way because on Friday the neighbors and my family threw a BBQ and I may have over done it with the food. I had Ribs, Carne Asada, Tri-Tip, and other goodies it was a great time. I tried to watch my fluid intake over the weekend and I did good because I only gained 1.8kilos, a far cry from my usual 4.0kilos that I remove on a average Monday. It's amazing now that I can see what I "could" feel like, I try to drink less. Because the major problems patients face is complications of trying to remove to much fluid during dialysis. I thought I had drank more than that. But I guess I sweated it off, it was very hot this weekend.
So today was the day I tried the "BLUNT" needles, I had stuck myself in the exact same spot 5 times in a row last week and today I tried a blunt, and I had no problem what so ever. I had to push a little for the venous, but the arterial went in pretty easy. I can't believe I have not been doing this until now. All the pain/worry is gone. The nurses say next week will be my last, and possibly mid next week. That would be great because I feel my wife and I are so ready. My wife and I did it PERFECT today 100% no mistakes. I am so excited and worried because I can't wait to get home on our own, but I am worried I may have to go back to in-center.
Today my wife had to leave early and will need to leave early for the rest of my training. She was able to take a week vacation last week, however this week and next she will need to train in the morning only. I asked the nurse if I buy my own centrifuge (blood spinner) would I be able to draw it myself and take to kaiser instead of having to have them stick me in my good arm and draw blood once a month, they are working on this problem, however until they have a solution I will have to go to kaiser once a month for labs plus my monthly visit. This machine truly is remarkable and has so far changed my life. I will continue to post my progress and my lab results when we draw again.
I ran at a PUMP speed of 480 for 2 hours and 23 minutes and felt fine afterwards. 480 really isn't as bad as it sounds. Plus the faster I run the more time I can cut off of my total time. I have heard some people run 500-600 speed however I don't think I want to go that fast. Today we went over error codes and went over my supplies re-order form.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Epoman, I'm so proud of you. I'm so glad you are going to be home and out of that center. I guess I'll have to take over bashing the D'v center. ;D
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Day Number 7
Well another day, today I felt something I hadn't felt yesterday, when you use a buttonhole the needle went right through my skin but when it got to vein I felt the vein bend, like the needle would not puncture it, with a little force I eased it in and all was fine. I ran again today 480 and I have actually noticed that my venous pressure is dropping, that is a good thing. I feel great yet again today. I only took off today .6 can you believe that? Less than 1 kilo, I could have sworn I drank more than that. Seeing how good I feel and the freedom that I will have and how I am free of duhvita, makes me sad to think that I may have to go back to in-center dialysis. It truly is a different world. I train in a special room all to myself however when I have to go weigh pre and post I have to walk in the dialysis unit and I look at the people there and I feel so sorry for them. I know they wonder about me, why am I coming in and weighing then leaving. But I guess I have paid my dues, I have served my time 12+ years of in-center hemo is a long, long time.
The social worker came in today to ask me the usual questions a social worker asks, and the training nurse and I went over the steps again to make sure I get it. We covered "put on" and "take off" I feel really confident. I didn't have to take home supplies today, I am getting addicted to getting supplies, I like seeing my cabinet nice and full of dialysis supplies, hopefully I will get some tomorrow.
My blood pressure has been amazing, no sickness spells as I would call them, those are just moments of extreme stomach sickness. Those are no more, I am tired however of getting up at 6am every morning. But that will soon be over, they tell me I may be ready by the middle of next week, I really hope so. Again today my wife and I did everything perfect 100% and the nurse tells me we are doing very well, also I have very little clotting in the dialyzer at the end and my machine hardly ever alarms during treatment. Things are going almost to good.
At the end of my treatment, a new patient was being given a tour and they wanted to see the NxStage, so after I was done they came in and I showed them the machine and I talked a mile a minute, I am so excited about the nxstage and I explained the buttonhole, the nurses were just smiling at each other while I bombarded this poor guy with this 10 minute long rant about the benefits of nxstage. When the wife of the man asked the nurse if she had anything to add, my training nurse just said no he about covered it all.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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You go boy!!! Great Job,,,glad to hear all is working out for you the way YOU want it to. Keep up the great work.
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Day Number 8
Today was a typical day, I met the pharmacist and we talked about the EPO and why am I worried about the needle and I explained to him that the needle hurts, he said are you sure and I said yeah I had it years ago. He said well things have changed now a days we give the Epogen in a insulin syringe, I said "huh?" so he showed me this needle which is maybe one half of an inch long and very skinny, I was shocked, I had no idea they used such small needles to inject Epogen. He said I would only need to do it twice a week and if I would at least consider it, I said I will. So I will be getting my Epogen tomorrow Sub-Q. He said I can stick it in my arm, stomach or leg, but he recommends I use the fat of the stomach. He went on to say that I can always go back if I decide I don't like it. So I will find out tomorrow if it hurts to much.
We went over the usual, set up and take off procedures. Plus today at the end we did a manual rinse back, I need to learn the process in case an emergency happens. It is very easy. Again my wife and I set up the machine PERFECTLY. The nurse says she will know by Friday, what day we can come home next week. I asked her if she knew a day so my wife can take the day off from work. Hopefully it won't be a full week. She also tells me when we go home, the next day they will come to my house for my first home treatment. We are ready to come home NOW! I wanted to take some pictures of me at training and of the machine but was told no, I couldn't I would need written approval before I could take pictures of myself in the training room, can you believe that? I still don't understand that. Got a little more supplies today, and met the case manager, her job is basically a person to call if I have a problem that the nurse can handle.
Again I only had to remove just over 1 kilo, can you believe that? I love this machine. Plus today my treatment time was only 2:19 instead of the usual 2:30 it's weird the machine adjusts your time and the nurse tells me sometimes the treatment is shorter than normal. Also I don't think I mentioned that the machine takes OFF all of the fluid first then, usually the 2 hour mark, then the last half hour or so is just pure cleaning of my blood. Also my Venous and Arterial pressures are getting better. And I have been running at 480 pump speed.
Oh and before I forget, I had a little problem today sticking my Arterial line with the "Blunt" needle, I got in the buttonhole but I could not Pierce the vein, it is was weird, I could actually feel the needle tip pushing on the vein but it would not go through. I never knew how tough those veins could be. So the nurses wanted to try but I told them I would just use a "Sharp", I used a sharp and it went right through. And again I had NO pain what so ever, even when I was trying to get the needle in with the "Blunt". It truly is amazing. I was told today that they are starting just now to use the buttonhole technique on their fistula patients in-center.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Epoman, I too was scared shitless about giving myself Epo injections, when i was in training, the PD nurse wouldnt let me leave until i did, well, 10 - 15 minutes (and a few tears later) i just pinched my stomach and it slid right in, no pain just a little tiny pinch but it was easy as that. If i can do it, i know you can do it too, Glad to hear all is going well with you and you journey... Keep on truckin' buddy..... 8)
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Epo in the stomach, well that kills your argument about saving your other arm for futrue access. (Nice Try) ;D
I don't care what you say or feel. We are NOT changing the name of this site! >:D
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Epo in the stomach, well that kills your argument about saving your other arm for futrue access. (Nice Try) ;D
I don't care what you say or feel. We are NOT changing the name of this site! >:D
Oh HELL no, I STILL hate dialysis, but I love NxStage. This site will ALWAYS be here even after I am dead! :o
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Day Number 9
Thursday, day number 9. Today we found out what my last day of training will be, it will be next Thursday the 27th of July, then the next day on Friday the training nurses will come over to my house and watch over us as we do our first day at home. I was hoping I would be done sooner but I suppose 14 days of training isn't to bad. Again today like yesterday I had trouble sticking the Arterial buttonhole site, it's the strangest thing, I go through the skin NO problem, but when I get to the vein, I can't pierce it, I tried using force but it really scares me. I tried and tried, but I finally just said give me a sharp. I used the sharp and it went right in. When I pulled out the buttonhole needle so I could use the sharp, it didn't even bleed. It's amazing how tough the fistula vein is, I could feel it just pushing the vein and not piercing it. I had no pain while I was trying to get it in, but like i said I gave up and just used a sharp. These kinds of problems are common though. My Venous buttonhole went right in, no problem. So we will see tomorrow.
The NxStage rep came and saw me today and he spent time with me talking and we just discussed the new Dialysate maker machine coming out and we talked about this site. He really is a great guy, the kind of guy you can tell is genuinely concerned about the person and not just the profit margin. I spoke to him about a new site I am making, but I can't say what right now. We had a nice chat.
Again today I ran at 480 pump speed and removed again very little. My run time was 2:22 which is great, the time flies. I can only imagine how fast it will go by when I am home. And like I told you I hate getting up so early and getting there in the morning, I don't know how people train for 4,5, or 6+ weeks. But It is worth it. The nurse went over the procedures with my wife and I, to make sure we really know it, we went over things like "put on", "take off", "manual rinse back", "temporary power failure", etc. Also today I had to go for a Chest X-ray and Bone density test, per Kaisers protocol. I thought the bone test was senseless, since I know my bones are bad, but I felt better afterward when the x-ray tech said my hip pins look fine, and when I told her I have had them in for 5+ years, she was shocked, she said they looked great. The bones in my legs looked really hollow but I was relieved to see that my upper area bones like, collar and shoulders looked good, lots of mass, they looked white compared to the ghostly image of my lower body. But I am glad about my upper body bones being less damaged.
Today I tried the Epogen shot in the arm like I talked about in day number 8, there was no pain, I just pinched the fat of my arm and I didn't feel a thing. So now I feel stupid making a big fuss about not getting it in the arm in the first place however like I mentioned before the last time I got a Epogen shot in the arm was YEARS ago, and man have things changed. But in case I want to go back to getting it the lines I can, so that is good. So I may have helped a future patient who does not want it in their arm, now they can get it in the lines.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Epo in the stomach, well that kills your argument about saving your other arm for futrue access. (Nice Try) ;D
I don't care what you say or feel. We are NOT changing the name of this site! >:D
Oh HELL no, I STILL hate dialysis, but I love NxStage. This site will ALWAYS be here even after I am dead! :o
I am so ooooo glad about that!! Especially after that scare you gave me Epo!! Man I am still not used to your sense of humour :P
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I"m jealous its not yet available in Australia !
Charee
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I"m jealous its not yet available in Australia !
Charee
For now learn all you can about it so when it does come you will be ready. Check out my new site: http://ilovenxstage.com
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I wiiiiiiissshhh it was in Australia. Why the hell isnt it?!?!?! And who can we hassle about getting it here? We are in drought here, and it doesnt look like letting up any time soon. They are talking about recycling sewerage water which would also be safe to use for dialysis. Im not against recycling, but why cant we get the NXStage here, surely it would save tons of water!
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I wiiiiiiissshhh it was in Australia. Why the hell isnt it?!?!?! And who can we hassle about getting it here? We are in drought here, and it doesnt look like letting up any time soon. They are talking about recycling sewerage water which would also be safe to use for dialysis. Im not against recycling, but why cant we get the NXStage here, surely it would save tons of water!
Don't worry .. it is not available in my area either yet and I live in Canada :(
I wiiiiiiissshhh it was in Australia. Why the hell isnt it?!?!?! And who can we hassle about getting it here? We are in drought here, and it doesnt look like letting up any time soon. They are talking about recycling sewerage water which would also be safe to use for dialysis. Im not against recycling, but why cant we get the NXStage here, surely it would save tons of water!
Is there anyone you can suggest that too? Maybe get the ball rolling there?
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Day Number 10
Day 10, end of the second week. Man I can't wait to get home. We got there again about 7:30am California traffic is a killer. I weighed myself and we started doing our thing but we hit a snag, my wife forget to enter the "numbers" after the 18 minute priming. The numbers is basically how much my goal is going to be and the rate. We missed that step and when you do things out of order it can mess things up. One of the nurses tried to save the day, so she "tricked" the machine. Tricking involves turning off the machine and opening the front and pull out the cartridge. The restart. Well that didn't work and we got an error she never even heard of "601" that error is not even in the manual. So instead of calling tech support right then and there, she decided to just start completely over. So that means we would have to wait another 18 minutes while the machine primed again. Good thing the nurse told me on the first day don't stick your needles until the machine is all ready to go. Today I was glad I listened. Anyway finally when the machine was all ready and I stuck my needles. Like always the venous buttonhole went in the first time, slid right in. I was now going to do the Arterial and remember the last two times I had to use a "sharp" because I could not get the arterial buttonhole in, well today I decided to go at a different angle and the blunt needle slid right in. I was so relieved. Plus I had read the night before that the two buttonholes develop differently. So after the "little" mistake my wife did, I felt better when I got BOTH of my blunts in.
The training nurse called nxstage and we went over my delivery schedule. The lady from nxstage informed me of some common sense rules but she also discussed shipping of supplies and stated that they will ship anywhere in the USA, BUT only the 48 contiguous states meaning not Alaska and Hawaii. I would be responsible for all shipping to those two states and anywhere else in the world. She also stated that if my machine were to break, they would send a replacement within 24 hours however if I am outside of the USA I am basically on my own. But I guess that's ok, I have no plans to travel outside of the USA. She also mentioned that I should keep the supplies in the original box in case my prescription changes and I have to return some supplies. She said the delivery person will put the boxes inside my house for me and If I ever have any problems with the driver, to inform nxstage immediately.
For the first time today, after 2 weeks on the machine I actually cramped, I tried to push my dry weight because of the two day weekend. So I had to get 2 100cc's of saline. My blood pressure went down to 90/69 which is nothing compared to when I try to take off 4kilos in-center and my pressure would drop to 50/30, seriously, yeah I know it's hard to believe but it's the truth. But over all I really felt fine at the end. Today I ran for about 2:20 and a flow of 480 and my goal was 1.8kilos but that included taking me down 500cc's below my dry weight.
So it looks like I have 4 days of training at Kaiser then the 5th day I will be at home. I can't wait to make those videos and take more pictures for my new site http://ilovenxstage.com did I mention that already? but it is online now so check it out at the link.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Day Number 11
Week number 3 FINAL week, day number 11 down. I ran at 480 flow, I gained 2.8kilos over the weekend, however we decided to just take of 2.0kilos and make up the rest tomorrow, that is the beauty of daily dialysis. My buttonholes are really developing great, It's actually kind of scary to be honest, when I take off the scab, I now see a hole, literally. I asked the nurse if my "holes" looked normal and she said yes, I believe her but it really is weird. But I guess I shouldn't be to worried since the buttonhole technique has been around for a long time. But again I can't express in words how nice it feels not having to worry about finding a new spot to stick. I really didn't feel to well this morning going to dialysis, doing daily it really is hard when you have to go 2 days over the weekend with no treatment. The good thing is, I will not have to go 2 days in a row with no dialysis when I am done with my training, in fact this last weekend was hopefully the last time I will have to go 2 days in a row, man I can't wait to be home! We didn't going over to much stuff today as I was really tired and fell asleep. I asked the nurse if we could draw my TSH so I have a result before I leave, since the next labs that I will have will be 1 month after leave at the end of this week. I ran a total of 2:22 today. The treatment today went smooth, no problems. The biggest problem I see with this machine is facing the reality that something could go wrong and I could end up back in-center and after seeing the benefits of this machine, having to go back in center would be a emotional tragedy.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Be Positive Boss, Everything is going to come out smooth sailing, i know i think alot about "what if" i have to go back to hemo, hey, if they day comes, it comes, nothing i can do about it, i just know i am going to enjoy this PD and my freedom as long as i can, Live for today my friend, for tomorrow may never come..... your gonna be aaaaaaall right ;)
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My friend who has been on home hemo for 20 years dreads when she has to go incenter for any reason too. But, it does happen once in a while. Keeps you from taking home hemo for granted! >:D Don't worry about it though.
Maybe you could network with other NxStage users and if your machine goes down you could go use theirs?? Not sure if that is possible?
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Day Number 12
Oh man, almost done, I can't wait. Today the NxStage "Nurse" came by, we talked and of course I mentioned my sites, but the great news we discussed was my KT/V Normally in-center I get 1.3 to 1.4 Kt/V now I won't get into the technical side of what the numbers mean but basically with me being on a 18 liter of solution a day, I am getting the same amount of clearance of in-center or VERY close to it, well the NxStage nurse told me I could run just 5 days and get the same KT/V if I just increased the liters to 20 from 18. In doing that I would have to stay on the machine for 12 minutes longer per session BUT I would save a whole day and only have to do dialysis 5 days a week instead of 6. Currently I only run 2 hours and 20-25 minutes, so even if I add another 12 minutes, I will still be under 2:45. But we will see how I feel, I may just do 6 after all, but I do like the fact of only having to do 5. BUT I will NEVER go 2 days off in a row, that is one of things I dislike about my training, I don't get dialysis on the weekend but I only had to do that for 2 weekends. This upcoming weekend I will be home.
I had to watch a video today on injecting my Epogen. I watched the video, but it is nothing I already didn't know. Then the Pharmacist came in and went over the instructions on how to inject it, and draw it properly. So after dialysis I got my little $250 bottle of Epogen, and drew some of this "liguid gold" into my syringe and stuck the needle in my stomach and it was very simple and painless. I call it Epogen but it is actually Procrit, Epogen and Procrit are just the brand names. The drug is actually Erythropoietin. But what ever as long as it works.
Today again, I ran at 480 blood flow and ran again about 2:25 my goal was only 1.9kilos, but remember I had left .8 over on Monday instead of trying to take off a lot of fluid on Monday, so I just made it up today. Again my buttonholes went right in and I had no problems. I do notice that when I pick the scabs off of my buttonholes, clear stuff comes out, for the more technically inclined the clear stuff is actually "Serum" which is basically the liquid portion of blood, with clotting factors removed. The nurses say it's normal. They say as long as it's not colored, clear is normal.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Day Number 13
Today was a not so great a day, I could not get the Arterial buttonhole in, so I had to use a sharp, plus my heart rate was in the 120+ range. And I didn't feel to great during treatment. I was upset because I worry about my fistula so much and when I can't use the buttonhole needle I get worried. I hate the fact that I may have to end up going back in center. The last few weeks have been like a vacation not having to go to Duh-vita or take the Dial-a-ride to Davita. And I NEVER want to go back. Tomorrow is my last day of training and I will be taking the machine home tomorrow. My wife got the day off for tomorrow. As I mentioned before the training nurses will come to our house on Friday to watch us do our first home session.
The doctor came by today and I asked her several questions, one of them being why can't I buy a centrifuge and spin my own blood and take it to kaiser instead of having to go to the lab once a month and have them stick my good arm and possibly ruin my veins for any future access I may need. She said she though we did draw our own blood, the nurse told her we only draw pre and post since that does not need to be "Spun" with a centrifuge. But our other labs need to be spun, so that is why we have to go in for labs. She said Kaiser can't afford to give out a centrifuge to every home patient. So I told her what if I buy my own? She acted like that might be a viable solution. We discussed it further and she will talk to the lab department and she what is needed to draw labs at home. So hopefully she will find out what is needed and I will see if I can afford it.
I also talked to the doctor about what the NxStage nurse said, about running 20 liters instead of 18 liters and only have to run 5 days instead of 6 (as I explained in day 12) She explained to me that Kt/V is just a measurement and she rather go by how I actually feel, I told her I felt great on 5 days week since I have only been doing 5 days a week during my training. She told me my Kt/V was fine and it is up to me if I wanted to only run 5 days a week, however she will write the orders for 5 or 6 days, so I will have enough supplies if I choose to run 6. She also didn't think it was necessary to run 20 liters of dialysate solution as the NxStage nurse recommended. That she felt going from 18 to 20 liters, I wouldn't see much difference, but she did say, she thinks I would feel even better if I ran 6 days. But she left it up to me. She did say I do need at least 5 days a week. Which is not a problem to me at all.
I also told the nurse how worried I was about having to back in-center possibly, and how I heard her tell the nxstage nurse yesterday how they do not send chest cath patients home with the nxstage. I brought up the chest cath because if something happens to my fistula, more than likely I would need a chest cath. She said they do not like to send patients home with a chest cath, but in my situation they would make an exception. So either she is just being nice and trying to help me not worry or she is being honest. I think she is being honest and it did make me feel better. Hopefully I won't have to find out.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Epoman you are being way too hard on yourself! I know it wouldnt help given that you only have a short time to do the training. Dont worry if you cant get a blunt in, it does happen a few times in the early stages. 6 months later and I have had to use the odd sharp, and because my fistula has moved, I have had to alter the insertion angle. It can be frustrating, but just persist and dont get yourself into too much of a tizzy. I think every home patient worries about going back in centre, its pretty normal here. I have been back in a couple of times, but you eventually get back home, and you will probly appreciate the rest.
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I worry about when I will do buttonhole because I have troubles with my fistula (it is still new but also very "snakey" and rolls a lot as well) but am surprised that you worry so much. You seem to be such an informed person that sometimes I forget that you just like the rest of us. I hope things get better for you. I have a high pulse too and I don't know if it is because the heart and fustula don't want to share all that blood (I read that somewhere) but worry can't help your pulse at all. Good luck with it all. And I hope the nurses keep cooperating with you!
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Day Number 14
HOME SWEET HOME! My training is OVER, well except for a home visit tomorrow so they can watch me do in-home the first time. Today was PERFECT, no mistakes, well except that my wife forgot the second step, which is to turn the machine on. I was to busy talking to the training nurse to notice, but we caught it before it was to late and have to start over again. But other than that, my "blunts" went in perfect, BOTH of them, my pressure was great, I only had to remove .8 kilo, can you believe it, today was a good day. So after I got on, about 2 minutes into the treatment, alarm "24" came on which tells me it's an arterial pressure problem. Well like we were trained, always check the patient first, I was fine. The weird thing was my arterial and venous pressures were great. So we decided to see if it would alarm again, and it did, so I re-positioned the needle a little and all was well. That was the only alarm of the day, in fact I didn't get very many alarms throughout the course of my training.
The nurse had my wife and I do a FINAL EXAM which was created by NxStage, however it is VERY easy and is even open book. We answered all of the questions and before we were through the NxStage rep, came by to visit me once more before I go home. We talked and I bugged him again for the acute stand, the acute stand is the official stand that NxStage uses for acute dialysis only, but I really wish I could get one. But if I can't then I can have my dad make me one, he is very good with making things like that. I also told the rep that I would love to be a "NxStage Patient Liaison" and told him how much I love this company and how It would be a dream come true to be part of such a wonderful company. I even joked around and told him how many NxStage patients run a "fan" site like www.ilovenxstage.com. But anyway I would just love to be earning a living once again and be a productive member of society, instead of relying on Social Security Disability to help support my family. But hey I can dream can't I?
So after we all talked and the NxStage rep had to leave, we finished the final exam, we passed and that was it. We just talked some more went over some more procedures, then it was time to be taken off, about 10 minutes before my take off time, my wife went down to get my Epogen from the pharmacy, while she was down their she called me and told me the syringes are not covered, well the Pharmacy doctor had told me there would be NO charge for the epogen, he said it is part of my dialysis, I guess he forgot to mention about the syringes, but it's OK, I see they gave me a 30 pack for a co-pay of under $5.00, well those 30 will last me just shy of 4 months, so a little over $15 a year for syringes is a small price to pay to be home. And besides the training nurse gave me a pack as well, as part of the supplies I need to have in my house. As I mentioned earlier I will be injecting the epogen instead of putting it in the lines like originally planned, but since it absorbs better I will only need 2 shots a week instead of 3 times a week if I put it in my lines after dialysis. There really is no pain. The needle is to small.
So when my wife came back up from the pharmacy, she took me off like there was a power failure or some other good reason to, she did a manual rinse back, so we would know what to do in case we ever did to it. The we disassembled the machine and broke it down in to 3 pieces, first piece being the machine itself and second the dialysate warmer and third the IV pole. We put it in the box, and just for the record, the machine weighs 75 pounds but bare in mind that is DEAD weight, so that bad boy is heavy, but just to clarify before the NxStage people read this and get upset with me, My wife who is 4'10" can lift it by herself with the handles, but when it is in the box, it is to awkward. But anyway the nurse called a male nurse over to help us get it in the car via a hand-truck. We got it in, all of the pieces and honestly I felt a big sigh of relief come over me and I told my wife, "I never thought something like this would happen to me." We told the nurse thank you and told the training nurse we would see her tomorrow at 7:00am for my first home treatment.
On our way home, we were hurrying because I was expecting my NxStage supplies today to be delivered to my house, it was almost 12:30 and they had told me the driver would be there between 1:00 and 3:00pm so we we were almost home when my neighbor called and told me a driver is here to deliver some supplies, we told him to tell the driver we are almost home to please wait, I wasn't to worried because the training nurse gave me supplies to do a treatment tomorrow in case the driver didn't show up. We finally got home about 1:25pm. The driver told my wife he had been waiting for an hour for us. We apologized for being late and did what all Californians do when they are late, blame the traffic. But he put our boxes in front of our garage for us, I'm sure he would have put them inside for us, but I didn't want to hold him up any longer so her stacked the 3 weeks worth of supplies, which is basically 36 dialysate solution boxes, 3 boxes of Cartridges, and a box or Waste lines. I only got 3 weeks this month but from now on all future delivery's will be a months worth. And honestly, 3 weeks worth of supplies does not take up that much room. I will be putting a thermometer in the garage to make sure it does not get to hot, but I think it stays cool inside the garage. Our plan is every Sunday my wife and I will be bringing in to the house a weeks worth of supplies.
Now I'm off to set everything up and get ready for my first home treatment tomarrow.
- Epoman
12+ years in-center Hemo
Current NxStage USER
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Way to go, Epoman!!!! I am at the edge of my seat, waiting to hear what it is going to be like at home. You guys are doing marvellously!
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I'm glad you are home, but other than that, I'm not sure of the benefit over the other home hemo machines. Space? Sounds like you have just as many supplies.
6 days a week for 2 hours and 25 minutes? or 5 days a week for 2 hours and 45 minutes? That is a LOT of time on a machine!
I guess the benefits are being at home and... being at home. Plus you say you feel better. I guess I would feel better if I stuffed one more day a week on the machine too, but I'm not doing it. :(
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I worry about when I will do buttonhole because I have troubles with my fistula (it is still new but also very "snakey" and rolls a lot as well) but am surprised that you worry so much. You seem to be such an informed person that sometimes I forget that you just like the rest of us. I hope things get better for you. I have a high pulse too and I don't know if it is because the heart and fistula don't want to share all that blood (I read that somewhere) but worry can't help your pulse at all. Good luck with it all. And I hope the nurses keep cooperating with you!
Angie, my fistula is snakey as well, and it moves around. If you start having problems with a buttonhole, you can just make another one in a better spot. I have had to move mine around a few times. I am now back to using the 2 original buttonholes. I also have a high heart rate, which Ive had since I first started getting rejection, but no one can tell me why. It has settled down a lot now and I think it usually hangs around 80-110 resting. Occasionally I have noticed it lower than that, but to be honest I don't really take notice of it. I mentioned it to the doctor yesterday (they actually did rounds at the home in-centre!), and she mentioned something about the high blood flow in my fistula. I think she also said something about a HR monitor, but as usual they don't talk to you directly, so I didn't hear what she said. I'll soon find out.
Epoman, I think you have done very well to get this far in so little time. You sound confident so you will be fine. Try not to stress, as its not good for the heart rate and it can cause clotting when cannulating I'm told. If you find yourself stressing, just take a breather for a minute, take some deep breaths, and try again.
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I'm glad you are home, but other than that, I'm not sure of the benefit over the other home hemo machines. Space? Sounds like you have just as many supplies.
6 days a week for 2 hours and 25 minutes? or 5 days a week for 2 hours and 45 minutes? That is a LOT of time on a machine!
I guess the benefits are being at home and... being at home. Plus you say you feel better. I guess I would feel better if I stuffed one more day a week on the machine too, but I'm not doing it. :(
Oh no, I need much less space than "other" home hemo machines. ALOT less supplies and I need no RO system, filters, tanks and all of the other crap you need with conventional home-hemo. It turns out I only need to do 5 or 6 but both times will be under 2:30 hours. I was really worried about the 5 or 6 days a week of hemo, but it really isn't that bad. And being home makes a big difference to me. Plus I love the freedom of dialyzing when ever I want, no more long weekends of fluid build up. I have been sleeping much, much better. I will be posting lots of pics on my site ilovenxstage.com real soon.
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I do like the part of not having weekends. I use to LOVE them at first when I was still peeing. Now, I have to restrict my fluid and I still feel like a Watermelon when I go in on Tuesday. I wish my schedule was Tuesday/Thursday/ Saturday/ Monday/Wednesday/Friday Okay..... I'll just say every other day, no breaks.
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Well done Epoman & Epowife. It must feel really good to finally be home! Looking forward to hearing the continuing adventure of nxstage after training!
Good Luck with your first day @ home. ;)
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Day Number 15 - Done Training
I'm done BABY! OH MY GOD! I could not have asked for a better day! My "blunts" (both) went in PERFECT, I had a great Arterial and Venous pressure, I only removed 1.2kilo, AND I only had to run 2:18 minutes at 480 blood flow. The machine did not alarm once and I mean not once, I think the machine is happy to be home like I am. The nurse came to our house about 7:00am and I took a few minutes to show her my websites and a couple of other things, she was really impressed with the sites. I even showed her my Nephrology News & Issues magazine editorial that I did. Then my wife and I started getting ready, my wife did everything perfectly, flawless. It felt good sitting in my recliner and being able to look out my window and have my TV hanging on the wall. I may have to add a Air conditioner to the room, because it is HOT, the fan helps but it is warm, I did lower the temperature of the dialysate solution and that helped cool down my blood, lol. But honestly this machine is amazing. I watched a little t.v. also the nurse asked my wife some safety questions about what would she did if this or that happened. Today is my Epogen shot, I forgot to take it before the nurse left, I guess she forgot to, oh well I will just inject it later. My blood pressure was a little low after treatment but I felt fine, it was 95/60 that's not to bad. I had asked the training nurse yesterday when was her next nxstage patient coming in for training now that I am done? She said not for a couple of months, I was shocked I asked why, she said she needs to train 6 PD patients, then go on vacation. She is the only one qualified to train people at the Kaiser I go to. I guess it was good I fought to get in as fast as I could. I was there 4th person they trained, and she said I was the fastest trained out of the four, 2 weeks 4 days. I wonder if that is a record, probably not. However I felt I could have gone home after the second week. Now that I am home I took some more pictures and will be doing the videos soon. I am taking tomorrow off to relax and will do a session on Sunday. I look back on the first day and look at how intimidated I was by the setup procedures but know I think it's a piece of cake, my wife and I can set it up in less than 10 minutes, it's too bad we have to wait 18 minutes for it to prime. But we can be setting it up while it's priming. I can see a few improvements that NxStage could make to the machine to make it even better, but I can't complain because like I have said before:
"Before I used to dream of seeing my son graduate high school and I would be content in knowing that I raised him and turned him into a man before my kidney failure finally got the best of me. But then a company like NxStage comes along and gives me hope and the very possibility of seeing my own son become a father himself. NxStage did not invent a new dialysis machine, they found a way to keep a father alive longer for his son."
And I truly mean those words, I tell everybody I meet about this wonderful machine, but in closing, my training went well, Nxstage trained the training nurses well and I feel confident that this machine will allow me to meet my goal of seeing my son off to college.
Finally, I would like to thank the research and development team and ALL of NxStage for all your heart and soul you put into this machine, you could have built yet another dialysis machine like the rest of the industry, but you didn't, you invented HOPE!
- Epoman
12+ years in-center Hemo
Current NxStage USER
Be sure to visit http://ilovenxstage.com/pictures.html to see pictures of my setup. :)
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Be sure to visit http://ilovenxstage.com/pictures.html to see pictures of my setup. :)
I must say those are the most impressive and more detailed pics I have seen for NxStage yet. Thank you for posting them on your site :)
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Be sure to visit http://ilovenxstage.com/pictures.html to see pictures of my setup. :)
I must say those are the most impressive and more detailed pics I have seen for NxStage yet. Thank you for posting them on your site :)
My pleasure. :) I hope that site will help people make a decision about nxstage, if it is right for them.
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I had a look at your pictures, and I am so jealous!!! :'( :'( :'(
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I had a look at your pictures, and I am so jealous!!! :'( :'( :'(
Remember though, I paid my dues for 12+ years straight of in-center hemo, NO transplant.
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I had a look at your pictures, and I am so jealous!!! :'( :'( :'(
Remember though, I paid my dues for 12+ years straight of in-center hemo, NO transplant.
I hope I won't have to wait that long (NxStage is not available where I live yet)
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Today, after many months of discussing NxStage at every visit w/ the Neph, I finally pinned him down. I reminded him that federal law requires every dialysis clinic to inform every patient of all options available and to either give the patient what they want or find a clinic that does. I reminded him that I have been trying since Nov of last year to find a NxStage program closer than Atlanta (two hours away) and find a closer clinic teaching the buttonhole technique. I told him we will settle for nothing else and will drive to Atlanta if we have to. I also told him I am amazed that clinics aren't scrambling to get these (home dialysis and buttonholes) which can save the clinics many thousands of $$$. Finally, he said, "Okay, we have a meeting on Thurs with people form the local clinics (Davita, Fresenius, and another I can't remember). I'll bring it up then." Yahoo! Finally a tiny step forward -- education about the NxStage and buttonholes is coming to the clinics in Greenville, SC.
During the conversation, one of the comments he made was, "If this machine is that great, there must be other dialysis patients who would want it." I had to explain to him that most of the local clinics are NOT telling patients that home hemodialysis is available. We know that first hand because we visited THREE, and none of them offered it to us as an option. Then add to that, the clinics had never heard of NxStage, so they certainly can't be telling the patients about it. So how can patients request a method or a machine the clinics don't offer or never heard of? ??? The patients and their families have to be like all of us here -- get on-line, find a place like this, educate ourselves, educate the nephs and local clinics, and keep bugging them until they're sick of hearing about it and do something. Yep, we have to be proactive. NxStage ought to be paying us commission. ;D
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HI!
I guess I was lucky. I just started dialysis last month and I am already going home with the nxstage machine with a "Button Hole" already established. I had really bad luck with dialysis at first, the folks who initially stuck me the first week of diaylsis nearly ruined my arm with 3 infiltrations in 5 days. I started dialysis with Davita in Mid-town Atlanta after that and I am ready to go home 3 weeks later! cool huh!
I HIGHLY reccomend getting the button hole and trying out this new machine.
:beer1; Jaybird
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HI!
I guess I was lucky. I just started dialysis last month and I am already going home with the nxstage machine with a "Button Hole" already established. I had really bad luck with dialysis at first, the folks who initially stuck me the first week of dialysis nearly ruined my arm with 3 infiltrations in 5 days. I started dialysis with Davita in Mid-town Atlanta after that and I am ready to go home 3 weeks later! cool huh!
I HIGHLY reccomend getting the button hole and trying out this new machine.
:beer1; Jaybird
If we can't find a NxStage program in SC we'll be going there, even if we have to move to GA to do it. Glad to hear you have had a good experience there. How long did you wait to get into the home program and start NxStage training?
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I only waited 1 week to get in. My doctor had some pusha nd he was very insistant. You have to PUSH these people. The clinic I was in had MANY empt seats. There is no reason they shouldnt take more people as soon as they get them.
Another good aspect of the button hole is taht my arm isnt disfigured. When I am not on dialysis and i'm not wearing bandades on my arm it looks almost nromal. I have two little "bumps" almost like pimples on my arms. Hardly anyone notices them, and if they do its because of my fistula sticking out and not the little buttonholes in my arm.
good luck!
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my wife and i start training for home hemo (on the nx stage unit) on dec 4th at a center 3hrs from home in Albany NY. We cant wait! With all the input I've read about from the different forums, i was able to get an OK from my Dr to transfer to the new center to begin training. the only problem is that my center isn't helping me with self cannulating and buttonhole development. I was hoping to have my buttonholes developed by the time we started training. At first they said they could help me, but now they are not as accommodating. I am really looking forward to being able to dialyse at home on my schedule, especially with winter fast approaching........
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Just wishing you and your wife some Good Luck Mark J. Hope all goes well for you :2thumbsup;
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my wife and i start training for home hemo (on the nx stage unit) on dec 4th at a center 3hrs from home in Albany NY. We cant wait! With all the input I've read about from the different forums, i was able to get an OK from my Dr to transfer to the new center to begin training. the only problem is that my center isn't helping me with self cannulating and buttonhole development. I was hoping to have my buttonholes developed by the time we started training. At first they said they could help me, but now they are not as accommodating. I am really looking forward to being able to dialyse at home on my schedule, especially with winter fast approaching........
:2thumbsup; :clap; Congratulations!! Hope everything goes well.
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You will do well!!
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You will do well!!
:bump; (even though this thread has a "sticky" ;) )
Be sure to check out http://www.ilovenxstage.com for updates.
- Epoman
Owner/Admin
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Epoman:
Since I'm still in pre-D mode..let me ask a dumb question...besides the "portability" benefits (huge), do you actually feel better, the same or worse physically using the Nxstage? Is this a system suited for newbie dialysis patients? Thanks!
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I don't know about Epo, But I am a novice dialysis patient, and I am doing fine on this machine. I haven't traveled with it yet, but I am going to be doing it soon. Has anyone traveled and had the bags shipped ahead of them? I wonder what a hotel will think when they get loads of heavy boxes for a person for only 4 nights stay. :P
Jaybird
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Epoman:
Since I'm still in pre-D mode..let me ask a dumb question...besides the "portability" benefits (huge), do you actually feel better, the same or worse physically using the Nxstage? Is this a system suited for newbie dialysis patients? Thanks!
I'm not Epoman, but my husband, Mike, started dialysis on 2/5/07 and he started on the NxStage. After two sessions he felt better and on the morning of the third day, before dialysis, he said his eyesight was much improved. He has continued to improve.
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Thanks Black and Jaybird!! ...good info for me to take in at this stage :thumbup;
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Epoman:
Since I'm still in pre-D mode..let me ask a dumb question...besides the "portability" benefits (huge), do you actually feel better, the same or worse physically using the Nxstage? Is this a system suited for newbie dialysis patients? Thanks!
There is no dumb questions. :) I think the biggest improvement for me has been the "emotional/mental" relief. I think the NxStage was designed for Newbie patients. It is VERY easy to use and I think the best thing you can do for your life is to start dialysis using the NxStage. I do feel a little better and I NEVER have fluid overload and that is a HUGE benefit, I used to dread Sunday nights. The thing is, I was "in-center" for 13 years and a lot of damage was done to my body over those years. So it is very hard to judge. But I do know that I can say to you with confidence that staying out of in-center and getting on NxStage will be the best thing for you. If you can turn on a computer, press some buttons and follow a manual you can use the NxStage.
- Epoman
Owner/Admin