I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: fearless on October 25, 2011, 02:55:14 PM
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I joined this site for the express purpose of publicizing this:
The Fresenius "Liberty" machine is inferior to the Baxter "Home Choice", and Fresenius is aware of the problems that the Liberty machine has, and not only is doing nothing about them (apparently) but is pretending that the problems don't exist. They are relying on patients NOT communicating with each other, so that they can make us believe that WE are doing something wrong, or that we have unreasonable expectations of the machine / therapy.
I have done peritoneal dialysis with the Baxter "Home Choice" for eight years. i had plenty of complaints about the machine, but after being forced to switch to the "Liberty", the Baxter machine seems like a dream!
Pluses and minuses of both:
Baxter pluses:
Easy two-step set-up. very fast.
Able to disconnect and re-connect as many times as desired (and I've never had an infection)
transportable for most persons (I am a small woman, and I can lift and move the machine - although I have to cart it if i need to move it very far
minuses:
the noise took some getting used to - it hums and drums all night
Fresenius pluses:
the machine is pretty quiet (although I've used three different machines already and one of them had a VERY loud intermittent noise: like a jackhammer!
minuses:
every machine and cassette and set-up configuration I've used still pumps air bubbles into me at the beginning of the fill. I;ve even gone so far as to make sure I had at least a liter to drain before hooking up, hoping that would flush out the air
the "connectors" are RIDICULOUSLY cumbersome: clever, complicated gadgets which hold lots of little air bubbles themselves. Do they reduce infection? Not for me, since I never had one with the very simply connector on the Baxter.
No ability to adjust the therapy "on-the-fly". If you wake up because you're uncomfortable, and you realize that it's because you're overfull because the machine just filled you and you can tell by the UF that the prior drain was incomplete: your only option is a complete "stat drain"! You lose that whole fill, and one whole cycle of your therapy. (as opposed to Baxter, which allows you to drain off whatever amount you feel will return you to a safe volume.
And if your therapy ended while you were asleep, and you realize upon awakening that the last drain was incomplete? you have no options at all, except to do a manual exchange.
The machine is bigger than the Baxter machine, and too heavy for me to move by myself.
But, worse than being forced to switch to this machine, is the fact that Fresenius counseled me through set-ups, sent me a different machine (not an easy thing for me to switch out) and made me believe I was trying to solve a problem that could be solved...when in reality, Fresenius knows about the bubble problems, and should have simply told me: our machine feeds bubbles into our patients and we think that's acceptable.
So, yeah, I hate dialysis. But I'm starting to REALLY hate Fresenius!
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I apologize .... I am new to the board and am presently pre-D ..........question: Who forced you to switch out and why ?? It sucks that you had a system that clearly worked for you and you had to change .... and I'm wondering why. Can you switch back to the Baxter again. I hope everything gets straightened out. Air bubbles .......... that's quite dangerous, isn't it ?? Sheesh.
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Hi ToddB0130,
Fresenius is a "vertically-integreted" corporation. That is to say: it provides any and all aspects of dialysis to its patients. Personnel work for Fresenius, supplies come from Fresenius, machines come from Fresenius. They even have their own pharmacy and provide the alcohol pads, gauze, etc.! They have control, top to bottom, of my dialysis delivery. When I started dialysis, my clinic was somewhat independent, and contracted service and supplies from various vendors. Baxter was my supply/machine source. Fresenius bought the clinic about four years later, and began to push everyone onto their own materials. At first it was subtle, but then the hold-outs like myself (why fix it if it ain't broken?) were finally given no choice. When they changed my catheter (which is done every six months) they told me I needed to switch to Fresenius. Apparently the clinic has to pay twice as much for Baxter stuff now that they're owned by Fresenius. Don't ask me why. I'm not even sure I believe it. Why can't my Medicare pay Baxter directly? I personally believe Fresenius will do ANYTHING to maximize its profits. When I switched over, they sent a ton of supplies, many of which I already had because I'd been doing PD for 8 yrs.. They will bill Medicare for these supplies and make a profit. And it was unnecessary expense! I hope Medicare is keeping an eye on them.
Also, for all those eight years. I made my own orders to Baxter. Their delivery schedule and methods were reliable and I could communicate directly in order to minimize problems. After they switched to Fresenius, I could only order through the nurse at the clinic. Orders became erratic and incomplete. It was not communicated to me that the Baxter catheter i had was obselete, and Baxter was running out of supplies for my particular connector. (one more way to "push" me to Fresenius)
My only option to stay with Baxter is to switch to another clinic. However, most of this was going on while I was preparing to switch to hemo (PD no longer working well enough and too many exchanges/too long a therapy/ too much dextrose for too many years - gained 30 lbs)
I preferred to stick with my doctor and the personnel at my clinic until I am on hemo. Now my doctor is retiring, and I'm planning to visit the other clinic in this town to see about switching. If for no other reason than to give Fresenius some competition.
Please don't feel like Fresenius is inferior clinically: my clinic has great statistics and i trust the people there. But the people are forced to "walk the company line" and it is not what is was. i feel I have to always be looking out for my own best interest, because the employees are forced to look out for the $ for Fresenius. And, as I've said: the "Liberty" machine SUCKS! :)
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Fearless,
If you are going to switch clinics and have been doing PD for eight years, have you thought about doing home hemo with NxStage?
If not, read through the NxStage threads to learn more about it. We did NxStage for about 2 and a half years until my husband got his TX and if it fails we will go right back to NxStage ASAP! Lots of freedom, excellent outcomes AND we could take that machine with us to travel!
Aleta
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Thanks Aleta. Certainly I'm going to look into that. My switch to hemo was precipitated by a number of calamitous things that have brought me to simply wanting to turn things over to others for at least a little while. It's just been too much for too long to try to control everything by myself, and feeling pretty bad. i spent the first few years of PD dehydrated and developed kidney stones - one blocking a ureter and possibly destroyed what was left of that kidney. That should never have happened, and when it did it was not dealt with as the emergency that it was.
Now I have a lot of reticence about actually turning things over to others and out of my hands. It's very likely that I will end up doing hemo at home because even though self-responsibility can be exhausting, and you can go down the wrong path - it still seems less risky than having others determine how things go!
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I haven't had any real issues on the liberty other then the alarm being super loud and having to replace a few worn out machines.
Have you tried hitting the back button 3 times on the last screen to get the tubing to completly fill just prior to the first drain/fill cycle? If you use the longer tubing with the one piece cassette design you need to hit the back button until you see the solution fill the entire tube or you will get lots and lots of bubbles.
BTW, I love working with Fresenius and wouldnt switch to another company for anything.
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I am reading this with interest, in a couple of week I will start training with Fresenius cycler. And I will need a longer tube in order to reach my bathroom.
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Like JLM, I'm interested in this thread since the bf is going to Fresenius cycler in about a month. I have not seen the Liberty machine at our clinic, only the Newton.
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Over the last months I have recieved so much negative feedback regarding fresinius that I hope my center doesn't switch to it.
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We have been with Frescenius for 7 years using the Newton IQ for PD for 5 years. The clinic is great, but lately I have seen big turnovers on the PD side, but NxStage has no turnovers in staff. We love this little machine. It has done wonders for my husband. No hospital visits since starting it (16mths). Just a couple meds he has to take. And we are in complete control of his care!
Traveling is much easier whether long or short periods at a time. Supplies are much less than PD, but you got to have some supplies. In all honesty, I wish we had started out with NxStage, but it was not offered. I remember the kenetics (24Hr), and I hated those! And the chances of infection are high, because of the catheter. Though PD worked pretty good for us at that time, but this NxStage is hard to beat!!!!
I use to think Hemo was just the worst, but not with NxStage! Yea, you still have the "Needle" thing, but it gives the best Dialysis. Better than In-Center. I just didnt like the In-Centers. Ive seen a lot of things that I just didnt want my husband to go through. The Zombies after D was just awful to witness when we were there! It was awful!
lmunchkin
:kickstart;
I don't know if they still have the Newton IQ any more, but we rarely ever had a problem with it.
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I'm on the Liberty cycler and really haven't had any issues with it. Setup is a pain since I think it takes way to long don't know about Baxter. Haven't had really any problems with the machine or bubble issues. Have used the machine for 5 months now. The alarm is loud but you can adjust it so I have it at a little higher setting to wake me up.
Fearless don't really understand why you can't order your own supplies. I order my own supplies every month. At my clinic I was given a schedule of when to call Fresenius and when they would deliver. They even deliver before 8 am for me since i have to be into work.
I don't use their pharmacy so can't comment on that .
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it's possible that if someone hasn't had the opportunity to use any PD machine other than the "Liberty" that there may seem to be no problems. I was beginning to get used to it, but if I had been able to continue PD, I would have done whatever i had to do to get back on Baxter instead of "Liberty". I had no experience with the "Newton" - which I would have looked into also if I were to stay on PD. I've just finished 2 weeks of hemo, and I am in mourning for my PD days. I will undoubtedly be looking into home hemo.
Thanks for the opportunity to slam the Fresenius "Liberty". It doesn't matter whether I can say with authority it's better or worse than some other machine - I just think a patient ought to be able to use what is best for them. But lately I'm seeing a whole ton of ways in which people on dialysis are not allowed to do what's best for them. It's always about compromise with the almighty dollar in the form of corporate profits. Where is the compassion? Well, I guess it's right here my friends... :)
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I hear ya! If you like Fords and all you have are Chevys to choose from, you, do you walk or get what is available?
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Yea, I agree Fearless!!! Its not right that the patient can't choose the best machine that works for them (even if its out-dated). I quess the Newton is out dated but we really liked it! It just seems unfair across the board, that when you find one that works great, then they want to go and complicate things! "Like we aint got enough to worry about".
I do hope if you are going to do Hemo, that you do it at home with NxStage! Seemed it was a little more to learn than PD, but not by much. It is like night and day when it comes to way my husband feels. His labs are excellent as of 2weeks ago! He has done tweaked and adjusted for so long, that now, he has it down pat! He looks better than he did when diagnosed with this Crap! I am thrilled for him, and he deserves it!!!
I know that it all was made possible with NxStage, period! I can not express to any of you how much better he feels. Iam just amazed by it all! I just wish those who can do NxStage at home, would. I understand that not all can, but there are some who can and just prefer not too! But, IMHO, you are missing out on "feeling better". Had he done this sooner, rather than later, I do believe he might still have his leg and toes. I may be wrong, but will never know!
Anyrate, forgive the rambling, but I totally understand Fearless! It is so frustrating!
lmunchkin
:kickstart;
But we have been dealing with Frescenius Clinic since the start, left for a different In-Center Clinic, and was glad to get back to Frescenius. Not all are the same though, so I imagine you have a total different view of yours.
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kinda skipping through posts and.......... got caught on this one and wondering *imunch* what is different with hubbys treatments that this last two weeks have been especially wonderful :)
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I think alot of it is due to him cutting back on his foods & liquids. He has been working on that for months now. Now when I D. him, Im only taking off .5 to 1.0. Thats pretty good. And he always reaches his goal with time left and the rest is just removing toxins. I do believe toxin build up is as harmful to the body as fluids.. He does real well with both.
Alot of times instead of eating something, he will have "Boost" with glucose control. I don't want him to drink more than 3 a week. But I think it makes him full and not so hungry plus it is good for him too. I will also add a scoop of whey protein powder to his Boost. His ALB a few months back was 3.2 & now is 4.4, His AdjCA was 8.0 but now is 9.1, Phos. was 5.9 now 4.7; K was 5.0 now4.1; A1C 7.0 dropped to 6.1 and HGB is 12.6.
He has picked up more meat and takes his binders more frequently than he use to. A couple months ago, the nurse at clinic told him that if he doesnt continue to decrease his phos and p/up more protein, he may have to go back in center! That is what opened his eyes IMO. It also opened my eyes too!!!
So to his credit, he really made the change and is getting acculades for it by the clinic! Nurse asked what we were doing different and I told her he has cut back alot and about the Boost & Whey powder! But I also told her that her threat was the main part!
The thing is Boswife, it really is alot easier on me & him, cause there is not so much to come off and reaching the goal can be quicker, thus more toxin removal. I am so proud of my J. He has been through alot, but I can see the determination in his eyes to live as long as he can! Of course, I will help in any way I can! He deserves nothing less. But I really don't beleive this would be possible with out NxStage! Or maybe I should say, WE never would have realised it, had we not choosen NxStage!
How are things going with you? Sorry Fearless for the intrusion!
lmunchkin
:kickstart;
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Thanks Imunch... I love hearing all D stuff but of course REALLY love hearing nxStage stuff so i thank you for your input. We too take .5 -1.2 tops. Almost always, .8 or .9 but sometimes on the first day, we do a 1.2.. We get results for blood tomorrow (I have the whole thing faxed to me) so hopfully his hemoglobin will be back. The only thing he struggles with is his Albumin... He's taking extra protien (promed now) and danged if he doesnt eat better than i would think he even has to, and still we have a hard time keeping that up. Now, the other thing neph said is that because he still pees, he is also loosing protien in his urin so that may acct for that number. Sooooooo glad to hear J's doing so well. TEAM effort is what it takes :)
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You are right about protein being lost in urine. J. does not pee so that could be a difference maker. But Whey powder is a very good source of protein, but does have other stuff in it that, if you use too much, it may send K up too high. That is why I give him Boost w/h glucose control with a scoop of Whey, 2-3 times a week in mrng only, so as to keep him full for a good while. J eats very little of everything. Tonight, when I got home from work, he had fixed for dinner, 2 pork loin, green beens, corn (yellow & white mixed), asparagus (for me-he don't like it) and cresant rolls. He had small to moderate portions of each. No seconds.
He & I do this every evening. Now I can't say what he eats during daytime, but I really don't believe he eats much, if at all. And to drink, I buy those small 8oz water bottles and he probably drinks 2-3 of them a day. Sometimes, he just drinks to take his binders and thats it. He has shown that he can have self control. And that means alot to me!
So far, very good results! Got to get to bed now, work commeth early in tha morning! Nite!
lmunchkin
:kickstart;
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Which whey powder do you buy? The one our nurse practitioner suggested was the worst tasting stuff ever!
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Body Fortress-Super Advanced (Chocolate). None of that stuff really tastes good, but you kind of get used to it. When he was incenter, he drank Nepro but it was awful, so Neph recommended Ensure. He did driink it, but wasnt crazy about his BS being high all the time.
Then when we got home with NxStage, I switched him to "Boost Glucose control) and add a scoop of Whey powder. Some mornings he will get up and have a Toaster Struddel, but other mornings I have him drink the above. He has gotten use to it now and really never complains much. I think this combined with his daily intake of things has improved alot!
What may work for him may not work for others, but give it a try, it can't hurt! I see your BF is doing PD, and protein is very important for PD patients, more so than Hemo! Try this Drgirl, and see how it does after a month!
Good Luck,
lmunchkin
:kickstart;
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Thanks! I will keep this in mind. So far he's keeping his levels right where he needs them. The nutritionist at the center treats him like a rock star. She loves him!
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Oh, I forgot to add, no doc' have told us to do this, it is all my idea! Don't want to say or blame a doctor for what I do! Just to clear that up in case anyone is wondering!
lmunch
:kickstart;
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awww, bodyfortrus,, thats what we were using but in the "shot" form. He just hates creamy type drinks i just wonder how to get that down him. lol He is sooo good as far as 2-3 egg breakfast, good protien lunch and a good bit in the eve, pluss his "shot" of what ever so its a pissy worry for us what to do next. did just get blood back and hemoglob moven on up (9.9 from the original drop to 7.2 :o ) but albumin down from 3.6... :( He had bad appitite though in hosp. and has taken him a bit to pick it up again so thats our new goal.. :2thumbsup;
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Hospitals are Nortorous for Diet Distruction. That can and is probably the problem for you both right now. Just hang in there and it will sort out.
Can you believe that it will soon be a year that you & Bo have been doing NxStage!
Has it been doing well for him?
Going to bed now, and yak at ya later!
lmunch
:kickstart;
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I find the easiest way to get the protein drinks down is to put them in a bowl stir some sweetener in them and set them in the freezer for 2 - 3 hours, then eat it with a spoon.
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We ae sooooo happy with nxStage, and yes, it's done wonders for him.
and,,,,,,great idea JLM... do you 'make' it with a juice or? I made him a mini drink with berries and protien yesterday.. I didnt give it to him cause i didnt want to scare him off..lol it was yucky. It was an egg white protien,,think i'll go get someore of the 'other' and try again... thanks :)
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We are sooooo happy with nxStage, and yes, it's done wonders for him.
and,,,,,,great idea JLM... do you 'make' it with a juice or? I made him a mini drink with berries and protien yesterday.. I didnt give it to him cause i didnt want to scare him off..lol it was yucky. It was an egg white protien,,think i'll go get someore of the 'other' and try again... thanks :)
I just use Boost with protein or any of the branded kind I drank the first Nepho sample (UCK) and tried the freezing method with the other samples I got from the dietitian. Twas easier to take. Mayhaps it was the flavor of the first that was so bad. Way too costly for me.
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Thanks :2thumbsup; Sounds like 'boost' will be on our list to try since the both of you are ok with it ;D
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I just gotta say that I love my Fresenius clinic and staff. I have had some issues with machines but they are all resolved now. I have had no problems with air bubbles, well, I did get an air bubble one time but that was my fault. But you do have to stand firm and make sure you get the level of care that you want sometimes.
I also understand that if these companies did not make a profit, they would not be around to provide me with dialysis services. Yes, they do need to provide comprehensive and quality care but the are also entitled to make a profit. That's their motive and reward for staying in business.
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awwww, back on subject ken ;) Im glad you added what ya added. It's always (to me) good to hear another side of things.. Glad your experience is better :)
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thank you again one and all for all your posts and comments.
I too trust and even admire the staff at my Fresenius clinic. And i think the fact that I've been with them for eight years and haven't complained about much if anything, shows that this is not unreasonable anger from me. I just don't like being put through pain and physical struggle for the sake of a corporation's profits, and, sorry, but that's exactly what it started to feel like.
Now that I'm on hemo, i have a new set of challenges to adjust to and the memory of what a huge hassle and burden my PD had turned into is fading. But it's still important for me to post my experiences with Fresenius "Liberty" because it absolutely is the case that if patients are all struggling with the same problems, but don't have a good way to communicate with each other, that allows the corporation to deceive the patients into thinking their problems are unique and not common, or are caused by the patient him or herself. So, kudos to this web site for allowing that communication. And thanks to the ladies here who are making me look forward to getting stable on hemo and then moving to NxtStage :)
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Fearless, we have done both PD & Home Hemo, and for us, hemo seems to be working much better. Now Im not saying PD wasn't a good modality, because it was, but IMHO I feel that he gets much better fluid & cleansing with NxStage.
When we did PD, we were constantly worrying about Infections, because as a Diabetic, he is more at risk (ESRD is too) for infections. You get the two combined, its like a double whamy.
Now, I never really thought that I could do Hemo on him at home, that is true. I think because of it being systemic (actual Blood) it really was a frightening thing to my mind. And had I not trained to do PD on him at home, I probably never would have taken on this endeavor! But God is good, in that he gave me the courage to try it and here we are! I now wish I had done this back when he was diagnosed, although Home hemo was never a given option, he might not would have gone through all the stuff he has gone through. Hind site 20/20, who knows what may have been?
We are thrilled beyond belief with this NxStage! It has given us some symblance of our life back. PD was good, and to some point, I believe it could be made better. Lighten the weight of those bags for one. Maybe come up with a system like PureFlow, where you can mix Dextrose with water and have a supply of solution for a few days! Allow the patient to set their own parameters and time, just to name a few.
I really believe you will come to like NxStage, Fearless. It is alot to learn but fairly easy to do once you learn.
I can't wait till you start and so eager to help in any way that I and others doing it, can!
Thanks for allowing us to "invade" your thread. Mighty big of you!
lmunchkin
:kickstart;
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I don't think I could view anybody's comments or conversation here as "invasion" - if anything, it's others being willing to have their conversations invaded!
Sincere thanks for your offer of future counsel - i know I will need it!
I live with my sister, who has said she is eager to be my help mate for home hemo, but i don't know if she really has any idea what's involved (I really don't yet either, but based on in-clinic, i know it's not simple)
thank you for your encouragement. I know I will make it work somehow, and yours and others' comments give me confidence and hope too!
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That would be great if she could do that! I think all they want is for those who are doing it, have a backup in case of emergency. Plus, it may make her appreciate the "real" struggle of this disease! It is "UNRELENTING", as you know all too well.
Take care & God Bless,
lmunchkin
:kickstart;
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I have no problem with Fresenius - the care I receive is good, but the Liberty I could do without. I'm on my 3rd unit (in 6 months) and this one is now having issues too. On the 2nd fill on it sounds like its pushing out air - very loudly. If I sit up or squeeze my stomache muscles, the noise goes away. It's too loud to sleep through and I can't figure out what it is. Dumb machine.
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The Vincester: One of the machines I had made an AWFUL loud sound every so often throughout the night. it sounded like a jackhammer! That was the one they sent to replace the one that kept filling me with club soda. But it also produced club soda, so i sent it back because at least the first one was quiet. I tried EVERYTHING to get rid of those bubbles - and when the nurse at the clinic had me sit down with her at the machine they use to train in the clinic - guess what? Bubbles! She said she just had never noticed them, but there was no further discussion. What can she do? If Fresenius feels that patients ought to be satisfied with that, then who can change it?
Right now I have MANY other battles to fight and will try to communicate with the company when I am feeling better and more stable physically. I believe they would want to improve their machine if enough people report the problem, and let them know that patients talk with each other.
But as i said, there were other drawbacks to that machine - the only drain you can do on-the-fly is a complete "Stat" drain, the set-up time is too long, and it's too big and heavy for an average woman to transport. There's no need for that, as the comparable Baxter machine is smaller, lighter, and allows manual drain at any time, for any amount.
Thanks again everyone!