I registered, but am waiting to be aproved.
I have been on dialysis since I was 17 and am 30 now. My first years were very hard and full of complications. I went on CAPD at first. I had lots of problems with the membrane. I had to have lots of revision type work on my belly. I have a had over 30 IJ catheters placed. About three years ago I had a transplant. In pre-op I told the Doctor that I was anaphylatic to a antibiotic that started with a K. I could not remember the name and was by myself and very stressed. I asked if they would call my clinic and get the name of the antibiotic. They said they would and didn’t. While in the operating room they gave me the antibiotic that starts with a K and I went into anaphylatic shock. I flatlined and they brought me back and continued to place the organ. Never mind that I had just gone into anaphylatic shock and my blood was flooded with antibodies. Needless to say the organ didn’t have a chance. It never even tried to take. So with a necrotic organ in my bady I began to swell and was in a emense amount of pain. We kept asking them to do a ultrasound and they wouldn’t. Three days went by and things were just getting worse for me. My partner said that he overheard a conversation between the DR’s and the INterns. One of the interns suggested that they do a ultrasound and make sure it is not necrotic. The head dr told him that the test would be on him if it didn’t show anything. Again needless to say, the organ was dead and they had to remove it that night. Ever since this episode I have had problems with my belly. The PD eventualy stopped working and I developed severe internal bleeding from the membrane. I also have been diagnosed with encapsulating peritonitis. ABout a year ago I switched over to Hemo in center. I had a quinton placed and had the fistula started. I ran on the fistula for two days. The third day the tried the tech went straight through it and blew it. It wouldn’t work any more and we had to revise it. Still nothing and another revision. Still no go and now I had a asleep feeling in my forearm that was painfull. So they tried on my Bicep. Again nothing. I have since given up on the fistula for now. I trained on the NxStage about three months ago. The training lasted about one month and I have had my machine at home for about two months. I use nocturnal 8 hour treatments six days a week. My numbers are better then they have ever been. My PTH has come way down, yay no removeing my parathyroid. In april I broke my greater troucanter or the top of my femur at the hip. I found out I had Osteo penia. It hasn’t fully healed yet. I want to heal though so I can skateboard again. Anyways that’s me. I am glad to have found this board…
Peace;
LSB
Hi LSB, you’ve been through allot but I’m glad you made it to home high dose dialysis and that you’ve made it here to a great message board. I hope dialyzing at home will get you medically stabilized, it sounds like a stretch of boring routine would be welcome.
I just did my first training run on the NxStage today in preparation to taking a trip (I’ll post my initial thoughts to a separate thread). My regular home machine is the Aksys PHD but I’ll be using the NxStage for the next couple of weeks.
I have some questions about using the System One for eight hour runs. Do you use heparin? How much dialysate do you hang and what is you blood pump speed (Qb)?
Yes I use Heparin, a 6000 unit bolis at start and a 500 unit per hour pump through out the treatment. I hang 5 5 liter bags, 25 liters of dialysate. BPS is 250. I raly like this way cause I can pull 1.4kilos off a day. This means I can drink alot of fluid and eat salt again. I still take my BP meds with it. Mainly cause I am realy going for it with my diet. I was realy tired of the 500mg’s of sodium restriction I had to put myself on to survive with a peritoneal membrane that wasn’t working. I dreaded Hemo and still am not all that happy with it. I miss my PD catheter and treatment. It was so much easier for me. I do like that once I am off the hemo machine that is that. I couldn’t use the cycler cause I pocket fluid. Best wishes to you with your journey…
LSB
Where do you attach the heparin line? Above the dialyzer or are you using the acute set-up?
1.4 over eight hours? I say treat yourself to a big glass of your favorite beverage, another liter would still mean only .3/hour
NxStage has a cartridge with a Heparin pump line on it. So the heparin goes in before the dialyzer. These cartridges are new and designed for nocturnal treatments. The nocturnal treatments are longer (eight hours) and slower blood flow rate(250). I have a pump machine that attaches to the IV pole that I put a syringe with heparin into and it administers it over the night.
Yes with this form of treatment I have had to add salt to food and drink more…Yippeee!
LSB
Leafsunbear, your one of the first persons here that mentioned using Nxstage as Nocturnal…you must be in the research study as I know that FDA has not appoved the machine for use as Nocturnal yet, one of the reasons that method cannot be prescribed on a wide basis…somehow looks like your getting great results so that really is great news… 8)
Hi y’all,
The FDA has not explicitly permitted any machine for nocturnal use. This is something that they may look into next year. So, use of the NxStage machine for nocturnal isn’t any more experimental than any other machine.
Yes I am part of the research group.
Well my your location in your sig I believe you, because I heard of it being done up in Northern Cali.
I trained at wellbound. I have been working with the techs at NxStage about the equipment. First the cartridges we were getting would yellow 14 and there would be no way to get the dialysate flowing again. It was either puff or get off. Something about a tube within a tube. That has been fixed. Now my cartridges no longer have the arterial pressure pump. That bothered me at first, but I am ok with it now. The big problem lately is the caps keep falling off. Off the solution bags and the green clamp dialysate line. We have learned to try and tighten them as soon as we open the bags up. SOmetimes though they fall off before the bag is opened or before we can reach them. At first sometimes they were so tight you couldn’t unscrew them. Now they are to loose. Funny. My clinic has been having trouble billing my insurance. Now that you guys/gals say it is not approved by the FDA that makes sense. They did promiss to pay for it for 18 months though. We’ll see what happens in 18 months. Maybe it will be time to hold a bake sale to pay for treatments. I think I was told each treatment costs about 50$ if I paid for it myself. Not bad realy. PD was like 20$ per exchange and I was doing six a day at the end of my PD experience. Anywas yes I am part of the research group and things look good. They were smart to choose me to train. My numbers were so bad, I had lost 20kilos in the past year and Many of my family and friends were scared I was going to die soon. Hell I was sure of it. Now things look good. Just need to get my Quinton changed probably sometime soon. I hate the idea of that, but I hate needles even more. YDo you know that when they place the Quinton the tool they use is called the weapon, BRUTAL… Once it’s in it is like it is not even there. Best wishes to you all. Oh’ yeah it is hard for me to believe that anyone would even consider that I am not telling the truth. Epoman said"Well my your location in your sig I believe you, because I heard of it being done up in Northern Cali." WOw! do people actually come on these forums and lie about this stuff? Seems to serious to lie about. I don’t know just me maybe I am to altruistic…
Peace;
LSB
Hi y’all,
LSB said:
Now that you guys/gals say it is not approved by the FDA that makes sense.
The NxStage machine is approved by the FDA. No machine is specifically approved for nocturnal dialysis. But your insurance is much more likely to be balking because nocturnal home hemo is still a pretty new modality that some companies are just not familiar with yet. As more of them hear about it, the funding will probably be a bit easier to arrange.
My numbers were so bad, I had lost 20kilos in the past year and Many of my family and friends were scared I was going to die soon. Hell I was sure of it. Now things look good.
I’m so glad that you’re feeling better! Nocturnal home hemo in the US was originally done as “rescue” therapy for folks who were not doing well on in-center hemo.
Epoman said"Well my your location in your sig I believe you, because I heard of it being done up in Northern Cali." WOw! do people actually come on these forums and lie about this stuff?
LOL–I don’t know about that, but I love your calling your town “Bezerkeley”! 
That link is to a 278 page transcript (Word Document) of the committee that reviews dialysis machines at the FDA. The discussion and deliberations are hoped to “result in a guidance document for nocturnal home hemodialysis”. It is interesting to read the discussion. The nocturnal discussion starts near the bottom of page 33.
It is also interesting to read that Guidance documents, though published in the federal register, do not establish legally enforceable rights or responsibilities. They do not legally bind the FDA or the public.