[quote=“beachy”]
What does this term"getting blood done" mean?? :?[/quote]
Like saying, “Cuppa Tea”… 
…literally the amount on short-daily.
Have you ever heard of Fisking? Here is the link to the Wikipedia entry Robert Fisk - Wikipedia
I am tempted to Fisk this entire thread but that would be way to long (especially as the thread moves to talking about Philli units) and mostly boring. I remember when this thread was at the top of the board, I decided to stay out of it because I did not have a personal experience to add, and also like Pierre I felt like the level of specific machine boosterism on the board was unhelpful – I did not want to add to the partisanship. I know I am seen as a Aksys PHD partisan, I’d prefer to be seen as a high dose dialysis partisan.
I agree with Pierre’s posts that the important thing is to advance the cause of high dose dialysis, which machine is used seems less important. Especially since the choice of which machine and/or modality is made by the provider. However there are dialyzors, like me, with a choice of machines and modalities and there are dialyzors with a choice of providers (and by extension machine/modality) or dialyzors who would seek out a provider after making a machine/modality choice.
Now that I have had a few weeks experience on the System One I feel obliged to share my clinical experience. I have a choice of machines through the Northwest Kidney Centers and I choose to continue to use the PHD. My experience on the System One is that 20 liters of dialysate is not enough, I felt under dialyzed and experienced a sharp decrease in appetite.
I switched to using more dialysate and no longer felt under dialyzed but my appetite, specifically my appetite for meat has been slow to return. I stayed at the Elephant Head Lodge in the Shoshone National Forest for two days after using the System One for six treatments – I had my seventh and eighth treatment during my stay (in previous posts I’ve noted that I had 9 runs away from center on the System One, that should have been 10 so including training runs my entire NxStage experience has been 14 treatments).
The Elephant Head Lodge has a dinning room that serves a limited, largely cow based menu. A steak the size of your head sort of place, serving prime, grade A beef to a hungry clientele. I had skipped lunch that day and felt hungry (but not as hungry as I would expect) as I looked forward to dinner. I ordered a New York and though it was a bit rarer then I like, it was a great steak that I could not eat. Perfectly seasoned, tender, juicy. I could barely eat half the steak; there was more steak left over than I was comfortable giving Cairny.
I am carnivore but I lost my taste for meat until about half way through my stay at my Mom’s house. Now I am sure there are a range of possible reasons but going back through this thread – the NephNurse posts – I read this with interest:
That sure sounds like what I experienced. In fact I have to say that the NephNurse (NN) posts seem to be accurate when speaking about the physics of dialysis on the two machines. It is unfortunate that NN also strayed into commenting on the business models of the companies and the statements of other posters. NN’s posts would stand up better if NN had chosen to focus just on the fluid dynamics and included links to peer reviewed studies backing the information.
Have any of you other System One users (particularly those using 15 liters) noticed a change in your food preferences? Your desire for meat? I remember the early years of being on dialysis I had to choke down meat to meet my dietary requirements. That went away when I increased my incenter dose and completely reversed since starting high dose home hemo.
Based on my three week experience I would say that the NxStage System One is 20% -25% less effective than the Aksys PHD and on par with the B Braun Dialog using a single use artificial kidney. I think that I would need a HDP of 125 if I was to use the System One, which would translate into 3 hour and 15 minute to 3 hour and 30 minute runs.
I also experienced the impact of not being able to directly set the length of my run using the System One because the length of a System One run is determined by the amount of dialysate being used. The length of the run is the time it takes to run through all the dialysate – more dialysate, longer run. However, once the amount of dialysate is prescribed the run length varies based on Qb – the blood pump speed in ml/minute – and to a much lesser extent the UFR – ultra filtration rate. On the System One, Qd - the dialysate flow rate - is a fraction of the Qb, NxStage calls this the filtration fraction.
My filtration fraction is 35, this means that my Qd is 35% of my Qb when using the System One. If my Qb is 400 (I use a Qb of 350 on the PHD) then my Qd would be about 117. Since I use 25 liter of dialysate the run length would be at least 213 minutes (there is a variation +/- 5 minutes based on the UFR). If I use a Qb of 450 my Qd changes to about 157 and keeping the amount of dialysate static at 25 liters the run length is now at least 160 minutes. So my reward for increasing Qb is that my run is significantly shorter.
I made this trade off the last night of my trip when I was in Billings. If I left my Qb at 400 I would have finished dialysis a bit before 1 AM, by changing my Qb to 450 I finished a bit after 12 midnight. I worry that by creating this incentive dialyzors will choose higher Qbs then they would otherwise. I also am unsure that the pressure reading on the System One are directly equal to pressure reading on other machines.
I believe that if I stuck my fistula and then hooked myself up in series to a PHD, a B Braun Dialog and a System One the exact same needle sticks would give three different pressures. I believe that the Aksys would show the highest pressures, the NxStage the least and the B Braun would be in the middle - the fact that the System One reports my pressures to be fine does not ease my concerns. I think there are long term penalties from a high Qb but I haven’t been able to find the supporting articles – so I am open to be convinced that a Qb of 500 is fine heartwise and fistulawise.
I do not like the idea of the largest carrot out there (run length) being used to encourage (or at least reward) a high Qb but that is a design feature of the System One. I do not like the low dialysate flow rates because a low Qd limits the effectiveness of a given minute on any machine, including the System One. I understand NxStage’s need to make a virtue of a necessity but I question their recent commitment to a low Qd with the PureFlow. I also should say that this tradeoff would change how I reckon my HDP target - My HDP target on the Sytem One would be 125 at Qb 400 and my target HDP would most likely stay at 100 at a Qb of 450. So my evaluation of the clinical effectiveness of the NxStage is at a Qb of 400, compared to my standard treatment on the PHD with a Qb of 350.
All that said I am very happy the NxStage is an option. I would use the System One long before I would consider going back to a standard incenter regime. If my choice was between the System One and the B Braun it would be close but I think that I would find a way to handle the supply issue and the portability factor would seal the deal in NxStage’s favor. Pretty much the decision Michael made at the start of this thread. I look forward to using the NxStage in October for the KDEC conference in Baltimore and on numerous future trips I am in the process of dreaming up. The NxStage does work and is safe.
However, looking at the two designs – the Aksys and the NxStage – I like the direction that the PHD has gone. The only question in my mind is the company’s viability and if they can stay in business. I certainly hope they find away to meet the impressive reliability and service standards and marketing savvy that NxStage has achieved.
Does anyone use a filtration factor of 50 or 40?
Bill wrote:
My experience on the System One is that 20 liters of dialysate is not enough, I felt under dialyzed and experienced a sharp decrease in appetite.
The gentleman we know who recently trained on NxStage said he was having some issues with appetite and lacked thirst (opposite of in-center). He said although he is now permitted to eat and drink more, he is having trouble consuming a full meal. His appetite is partially supressed. But he did say that he can snack on things a little more often as far as phos. and potass. foods and can eat at times he hadn’t been able to while on in-center dialysis.
When I heard his account, I asked on the board if anyone else had experienced this since I’ve only heard other SDD patients say their appetite is better. I wondered if this was something only those on NxStage experience or if everyone experiences this when they change from incenter to SDD no matter what model machine. So, your experience seems to confirm at leaste that there can be a problem with appetite on NxStage and I see you are saying you feel it is because you are being underdialyzed. You seem to say that let’s say 2 hrs on a NxStage is not equivalent to 2 hrs on the PHD.
NephNurse’s comment makes one wonder. We also wonder if the lactose solution of the NxStage has anything to do with the changes in appetite and reduced thirst.
Our gentleman friend said his labs and his kt/V are extremely good, yet his appetite has not normalized. So, then like others have said, perhaps kt/V is not as good a measuremennt as how the patient feels with the amount of dialysis prescribed. He is on 15 liters and his pressures are much lower than they were on his in-center machine. He had also wondered why his pressures were so much lower on NxStage than on his standard machine.
One thing that I read in your message was that the man you write about says that he can snack more often and on more things than he could before. Is it possible that he’s eating more than he think (or that you know) when he’s snacking so he’s not hungry at mealtimes? Depending on his snacks, it could mean that he’s not getting enough protein. If he’s not feeling very good, another lab value to look for is albumin which is best if it’s 4.0. If it’s 3.5 or below, patients are at risk of infections because they’re protein malnourished.
My recommendation is that your man or you and any other caregivers should talk with his dietitian about his eating pattern, when he’s hungry and when he’s not, how often he snacks every day, what he eats for meals and snacks, what foods he especially enjoys, what he doesn’t like. The dietitian may want him to keep a food diary for a few days. With this information and the patient’s recent labs, hopefully the dietitian can help answer your question since he/she is the most knowledgeable about nutrition of anyone working in dialysis, including the nephrologist.
The issue with going by the Albumin measures is that if the dialyzor is compensating for increased blood nitrogen by eating less protein it could through off the measures, I think. I’m not too sure of all the dynamics of Albumin. I believe that if you suspect that you have lost your taste for meat or protein generally you should keep a dietary log for a week or some period of time. The recommended protein requirement is 0.8 grams per kilogram of ideal body weight (I think that is current).
The way to figure this out then is to look up your ideal body weight for age/height. For me I think it is about 78 kilos and then multiply by .8 grams which equals 62 grams or about 2.2 ounces of protein. That does not sound like very much but it is important to get at least that much a day. A dietary log would identify a deficiency.
Beth wrote:
One thing that I read in your message was that the man you write about says that he can snack more often and on more things than he could before. Is it possible that he’s eating more than he think (or that you know) when he’s snacking so he’s not hungry at mealtimes? Depending on his snacks, it could mean that he’s not getting enough protein. If he’s not feeling very good, another lab value to look for is albumin which is best if it’s 4.0. If it’s 3.5 or below, patients are at risk of infections because they’re protein malnourished
.
He is getting enough protein- his albumin is extremely good. What I am saying is, he says he has a feeling of fullness. It is like he is not as hungry or thirsty as he used to be. He thought he would have an even better appetite on SDD. He said it is great to be able to consume a little more of the forbidden foods he had to forgo, previously, but says he still struggles with appetite at times. Not that he doesn’t get enough to eat most days, but he thought it would be greatly different once on SDD and he finds that he still has his ups and downs with appetite. But like I said, he is very happy that he is not as restricted and can enjoy a number of foods he had to pass up previously.
I have thought that maybe fluid is the problem, because one still can not drink much more fluid on SDD and fluid can block appetite at times. He says overall his energy is more even on SDD which is good. And he said on in-center he was pretty hungry for breakfast. Now he still eats a good breakfast, but get’s full sooner. Then, he is not very hungry at lunch time so only eats a little fruit and waits until his appetite builds up and has supper anytime between 3 and 6. Says he had a better appetite for meat than some patients on in-center dialysis always having a good albumin, but is not having a big jump in appetite on SDD as he had expected.
I think it could also be that there may be an adjustment period in getting used to a new form of dialysis. Or, like Bill said, maybe his clearance isn’t as good as it could be. My family member on in-center dialysis has experienced dialyzing 30 minute longer txs, but does not feel any different as far as appetite/energy. So, we’d be interested to know what patients on SDD have observed as far as knowing they have the right amount of dialysis to feel their optimal best as Bill was saying in his post.
Our dietitian is new to dialysis and knows next to nothing about SDD so he does not have much to advise currently.
bill wrote:
believe that the Aksys would show the highest pressures, the NxStage the least and the B Braun would be in the middle - the fact that the System One reports my pressures to be fine does not ease my concerns
We observed that there was a significant difference in pressures despite being on the same model machine in two different units. We read on a tech board that the type lines can make a difference in the pressures. So, this could be something else to consider.
Another thing I thought of, our gentleman friend said since being on SDD, his weight has gone down almost 2Ks. He doesn’t know if this is fluid wgt. or real wgt, but thinks it’s some of each. He used to get puffy around the eyes on his 2nd day off dialysis, but never does anymore since he is removing fluid daily. He feels he has been able to get much closer to his dry weight with SDD. Neverthleless, he says he still feels fluid buildup in his abdomen area as the day goes on and this affects appetite. Could be some people are just more sensiitve to fluid.