=== My NxStage adventure a day by day account of the training. ===

[Epoman]

These posts are originally posted in this thead: http://ihatedialysis.com/forum/index.php?topic=43.0 I will continue to post at that other thread, however I will also post here my day by day account as well. I have LOCKED and STICKIED this thread, I locked this thread so people can read my day to day account with out having to read others replies. However if you wish to reply to any of these posts, please repy in the original thread which is located at the link provided above.

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

[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

[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

[Epoman]

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

[Epoman]

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

[Epoman]

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

[Epoman]

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

[Epoman]

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

[Epoman]

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

[Epoman]

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

[Epoman]

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

[Epoman]

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

[Epoman]

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

[Epoman]

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