Nxstage.com A great company doing great things, check it out. Portable Dialysis.

[Hawkeye]

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.

[Epoman]

Well here it is, I am going to start. I start July 10th. This coming Monday  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.  because you just might get it.  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. 

- Epoman

[Bajanne]

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!

[goofynina]

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

[Black]

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

[Black]

Well here it is, I am going to start. I start July 10th. This coming Monday  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.  because you just might get it.  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. 

- Epoman

Tomorrow is the BIG DAY!!  Please let us know how it goes.

Lorelle

[goofynina]

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....

[Rerun]

Well here it is, I am going to start. I start July 10th. This coming Monday  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.  because you just might get it.  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. 

- 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.   

[goofynina]

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.....

[Epoman]

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

[Rerun]

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!   

[goofynina]

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) 

[Bajanne]

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.

[kitkatz]

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

[jdat]

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? 

[Epoman]

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

[angieskidney]

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 would be interested in them if you wanted to post there about it as well

[Epoman]

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 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. 

[angieskidney]

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 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

[Epoman]

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

[Rerun]

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)??

[Epoman]

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.  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. 

[goofynina]

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...

[anja]

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!

[kitkatz]

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